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High TSH but normal free t4. Help please?

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clare18317
clare18317

For sometime I have had panic attacks and frequent infections of chest and ears and viruses.Last April things moved on quickly and I was covered in painful itchy blisters, neuropathic pain, vertigo and feeling shut down. I was covered in bruises. Ambulanceman reported an ischaemic looking ECG and took me to A and E.

The only findings wee raised TSH with normal freet4 and nomal Thyroid peroxidase abody. Also raised basophil and eosonophils. They said hypothyroid but my GP says no as no autoantibodies?

I am still suffering-eyebrows gone, no energy, dry wrinkled skin and 3 more courses of antibiotics for chest and throat infections. Any ideas, anyone? Also sight got really bad and joints ache ++

 

3 likes, 40 replies

40 Replies

  • barbara98940
    barbara98940 clare18317

    Posted

    Hi clare, symptoms indicate hypothyroidism. However, these symptoms can also be the same for other medical conditions. Having said this, your situation is similar to mine: high TSH, normal T4, hypothyroid symptoms. The key to finding out what was wrong with me was to do a T3 test. This was low, indicating my body wasn't converting the available T4 to T3. So getting a T3 test done may be the answer for you. (Your T4 and TSH also need to be done from the same blood test so you can compare where all three results are in their respective ranges). In your situation I would go and see my GP, take a list of symptoms, explain you've got classic hypothyroid symptoms and ask him whether something else is going wrong in the process, then explain you think your body might not be converting T4 toT3 - something that adding T3 to the list of things checked in the blood test will show up.

    It will help you understand his response if you know what the process is regarding your thyroid. So I'll have a go at explaining, though Shelley is much better at doing so than me. She's brilliant and will no doubt respond when she gets chance - thanks in advance Shelley smile

    Step 1: When your body needs more thyroid hormones, your pituitary gland sends out Thyroid Stimulating Hormone (TSH) asking your thyroid to produce more thyroid hormones (T1, T2, T3, T4 and calcitonin). The important ones here are T3 and T4.

    Step 2: In response your thyroid produces the thyroid hormones.

    Step 3: T4 has to be converted to T3 before it can be used by the cells in your body.

    Step 4: your body's receptor cells receive the thyroid hormones.

    Any one, or more, of these steps can go wrong. Stress is particularly good at messing them up, particularly steps 3 and 4. (Google ' reverse T3').

    So the key question to your GP is could one if the other steps in the process be going wrong? If he doesn't agree it could be, ask 'i'm obviously unwell, what else could it be?' Ask him to check your vitamin and mineral levels. Specifically: iron, ferritin, vitamin D, vitamin B12, potassium, magnesium, selenium, calcium. If he isn't doing what you need him to do, ask to be referred to an endocrinologist (a doctor who specialises in hormones). Good luck!

  • barbara98940
    barbara98940 clare18317

    Posted

    By the way get your GP to check your platelet count. Low platelets means you will bruise easily. Though what you had sounds more than this.
  • barbara98940
    barbara98940 clare18317

    Posted

    Your antibodies will only be high if your immune system is attacking your thyroid. So it's not immune related hypothyroidism, hence my thought that something is going wrong further along the process. Another thing you can try are: seeing a different GP. Some are more knowledgeable about thyroid issues and GPs vary in whether they are willing to work collaboratively with you to find the answer. So in summary, book an appointment with your GP and have another go, or (and this would be my preferred option) see a different GP and follow the ideas in my previous post.
  • joe42841
    joe42841 clare18317

    Posted

    Clare - How high was your TSH?  In addition to doing a thyroid peroxidase antibody (TPO ab) check, did your GP also check your antithyroglobulin (TgAb) ?  ONE type of hypothyroidism (called Hashimoto's Disease) results in either your TPO ab being out of range (high) or your TgAb being out of range, or both being out of range.  Your doctor needs to check BOTH.  These tests are only to diagnose one type of hypothyroidism (Hashimoto's).  You can still be hypothyroid due to other causes (damage to your thyroid, for ex.).  - Joe
    • clare18317
      clare18317 joe42841

      Posted

      No only TPO. Free T4 13PMOL/L and TSH 6.29. Low sodium and high basophil count. Platelets and liver and kidney function ok. Not anaemic.I do have Antiphospho lipid Syndrome so auto immune is more likely with me as I have raised anticardiolipin levels. Than for replying.-Clare
  • karen75672
    karen75672 clare18317

    Posted

    hi clare are you on levo for thyroid disorder.x
    • clare18317
      clare18317 karen75672

      Posted

      No but think I should be. High TSH and normal free t4. Very symptomatic-eyebrows half gone, arm hair gone, skin dry and wrinkled.

      Easy bruising and hoarse voice.Skin rashes .fine,fine hair.and frequent chest and ear infections and had 4 courses of antibiotics since June. thanks-Clare

    • karen75672
      karen75672 clare18317

      Posted

      hi claire you sound very much like me but ive been hypothroid nearly 24 years and my doctor wouldnt supply me with ndt so i took the chance and im on ndt now 6 days and i can honestly say i havnt felt this well in years,you need to see a more understanding doctor who can help you,im trying to get to see a endo but my doctor wont budge im not giving up im seeing him on 25/9/15 hoping he will support me in taking ndt the only other option is to go private and thats costly,dont give up hope see another doctor ,xx karen
    • barbara98940
      barbara98940 karen75672

      Posted

      For info: I'm seeing private endo in UK. Cost £200 first visit, £90 subsequent visits.
  • shellyC19
    shellyC19 clare18317

    Posted

    Hello Clare:

    My name is Shelly and I am a Nurse and I live in the USA.  I have an autoimmune condition called Hashimoto's Thyroid Disease.

    The way the thyroid works was excellently explained by Barbara.  Thanks Barbara!

    I will add:  In a person without thyroid disease our thyroid gets a signal that  the level of T4 is low, (like a sensor), and then it makes a signal hormone called Thyroid Stimulating Hormone (TSH ) and it will make more T4. T4 should be converted by the thyroid into T3.

    Now we need T3 which is a useable hormone by the body. This hormone supplies you with energy and is what they call a "useable hormone".  It is used by the cells in the body.

    Symptoms you list above are of Hypothyroidism, many include: gaining weight, feeling cold, feeling tired & sleepy, having low energy, having no periods or infrequent ones, dry skin, brittle nails, hair falls out, brusing easy, feeling depressed, &  low pulse. There are more but these are most common.

    Now the trick is having all the blood work done to confirm all this.  Some of the blood work done, TSH level, T3 and T4 levels, mineral panels, that include Sodium, potassium, calcium, magnesium, ferritin, and iron levels.  Also a Vit D. level is very important as many of us with thyroid disease have a relationship with low Vit. D. Also a CBC (Complete Blood count), and WBC (White Blood Cells count).

    Thyroid Disease is sometimes a family trait, and it can also come from a virus called Epstein-Barr Syndrome, (EBV), for short.  Also it can happen after a period of stress on the body.  It can happen during pregnancy and after pregnancy. Also other disease conditions can damage the thyroid like Lupus, and cancer.

    Since you say you have had a lot of infections recently and your basophils and eosonophils are raised, it may be due to the infection but after you are over that, I suggest they run that blood work again.  It means the white blood cells are raised and that is not a good thing.

    You  seem to have a weaker immune system as you have had repeated infections.  Having lot's of infections in the respiratory area may have weaken your lung tissue and make you prone to them.

    Once you will start on replacement thyroid medication you will feel better and your hair will grow back. It can take a while, some take longer.  My hair came back on my head in about 8 weeks. Eyebrows take longer. The medication will take a while to build a proper level in the body, and it can take about 4-6 weeks in most of us.

    You will need to build up your immune system.  This is just a suggestion, please wash your hands frequently, eat healthy foods including vegtables. If able eat some strawberries each day, a good source of zinc and helpful to the immune system. I would also suggest a very good multivitamin with iron.  Please drink lot's of water and no soda products.  Please stay away from anyone with a COLD virus as you do not need repeats of this.

    Any questions, just ask.  many of us have been where you are and can give you good advice.

    XO, Get Well, Shelly

    • clare18317
      clare18317 shellyC19

      Posted

      You are very kind. The bruising is awful with me and the doctors have seen it and been alarmed-still no help. I have to stick my nails with glue to repair huge splits at times. Had Epstein Barr-Mononucleosis. x

       

    • shellyC19
      shellyC19 clare18317

      Posted

      Hello Clare:

      Please do have your iron level checked.  If you can eat Jello it does help build nail strength and also use a nail hardener Nail Polish that is available in some beauty stores. 

      Let us know how you are doing and once you get on thyroid replacement meds many of the symptoms will subside.

      Stay well, Shelly

    • shellyC19
      shellyC19 clare18317

      Posted

      Hello Clare:

      If you had EBV and you have a weaker immune system, I would say it seems more like Hashimoto's Thyroid Disease. It is treatable and I have had it since 1987 and I am on Cytomel (Liothyronine)  pure T3 as I do not convert T4 into T3 well.

      I am now 54, and feeling the best I ever have. It gets better with treatment.

      XO, Shelly

    • barbara98940
      barbara98940 clare18317

      Posted

      Clare, I've just had an idea...ask your doctor to put you on a trial of 25mcg of thyroxine. NICE guidelines suggest this for someone with high TSH and normal T4.
    • barbara98940
      barbara98940 shellyC19

      Posted

      Hi Shelley, I'm trying to work out how much liothyronine is normal to take if I have to switch from NDT (currently paying for NDT myself). How much liothyronine per kg is recommended? Thank you.
    • shellyC19
      shellyC19 barbara98940

      Posted

      Hello Barbara:

      It comes in increments like 5mcg, 10 mcg, etc... how much NDT do you take now and are you going to stop NDT or add to it?  So PM me your weight etc...always go smaller dose and then add to it, if T3 is low.

      I know some people who take 5mcg and stay or lower their NDT or Levo.

      Shelly

    • barbara98940
      barbara98940

      Posted

      Erm, my last post assumed you were in UK.
    • clare18317
      clare18317 shellyC19

      Posted

      Hi Shelly, well here we go again!! Another chest infection on the back of a cold I caught from my daughter. This time, however, Eosinophils have gone up, GFR now 73ml/min and TSH is 1.3??

      The Doctor was ok to a point but has told me the GFR is fine ( I don't think so) and that I have no thyroid issues as TSH normal now.No other tests like Free t4 etc. because TSH was well in the range.

      Why would it swing from 6.9 to 1.3 in 3 months without and intervention? Can you-or anyone else-comment please as I am really confused. Many thanks. Clare x 

    • shellyC19
      shellyC19 clare18317

      Posted

      Hello Clare:

      I am sorry to hear of the new infection.  I hope you do not need antibiotics again.  It is so important that we protect our immune systems and if your Eosinophils are up, it means your body is trying to fight the germ/bacteria and you may need to have a round of antibiotics if it settles in your chest.

      In some of us our chest area (lungs) get the germ and it settles there quickly. If you are able, you should consider the Pneumonia vaccine to protect you from getting that in the future.

      TSH:  The TSH (Thyroid Stimulating Hormone) is like a sendor in your body and when it goes on the low end of the scale 1.3 as an example, it means you have enough T4 in your body. Normal is (0.34 -5.60) or about that range.  When it hits the higher end it means you you do not have enough thyroid hormone and it tells the thyroid gland to make more. Normally the thyroid take T4 and converts it into useable T3 in your body.  We all need to have T3 as our whole body uses this hormone.

      It can swing back and forth in people in the beginings of thyroid troubles. Some people's bodies settle over a period of time. It can take weeks to months to do this.  Then of course there are things like being ill from an infection or stress on the body, that can interfere with your thyroid's TSH.  So when you are having the FLU for example, you may have a high TSH for example. 

      Also in some of us the gland swings back and forth from High TSH & then Low TSH  say in autoimmune Hashimoto's Thyroid Disease.  It is common to see that in people undiagnosed and not on medication for the thyroid. Also in the early stages of Hyperthyroidism people can swing back and forth.

      Some doctors rely on the TSH alone and that is BAD!!   T4 and T3 measure the 2 hormones our bodies rely on.  It is a much better way to analyze the function of the thyroid gland.   If the TSH keeps changing they need to check the blood again for TPO (antibodies test for autoimmune). Also a T4, T3, and mineral panel should be done.

      Please have your doctor recheck your TSH level within the next 4-6 weeks to see if it is okay and suggest to him or her to test also Free T3  and Free T4 along with the mineral panel needs to be checked. 

      Has your energy level changed?  Has any of your hair grown back? Has any symptoms worsened?

      Keep us updated, Shelly

    • clare18317
      clare18317 shellyC19

      Posted

      Thank you so much.Hair and nails slightly improved. Doxycylcine again for awful cough and chest pain. Very very bad throbbing in right side of neck upto- but not in-the ear. Feels like a lump that side.

      Thank you again for your trouble. Clare

    • shellyC19
      shellyC19 clare18317

      Posted

      Hello Clare:

      There are lymph nodes going under your jaw along the chin area and to your ears.  When you have  an ihfection they get put to use to help fight the germs.  They get swollen a bit and then when you are well, they return to normal.  The lymph nodes act as a filter in your body and help to trap germs.

      They also help to protect the immune system a bit.  It may feel like an earaches if they swell.  Complete your antibiotics in full, and it should return to normal.

      Have your doctor watch your TSH level to see if it swings again. Hopefully it will stay in normal ranges.

      Be well,  Shelly

    • barbara98940
      barbara98940 shellyC19

      Posted

      Hi Shelley, my GP got told by the Clinical Commissioning Group (CCG): 'no he wasn't allowed to prescribe T3 on NHS' - and this is despite my having it prescribed in the past (prior to 2012 when the rules changed). So, the appointment on 15 Oct 2015 with the endcrinologist rumoured to be sympathetic to NDT is now even more important (though only to my finances, thankfully having found ThyroGold at least my health is back on track, despite the CCG and the medical profession's stance on NDT!)
    • shellyC19
      shellyC19 barbara98940

      Posted

      Hello Barbara

      That group CCG is really something!!!   It is a shame.  It is playing with people's lives.  Well, you will have to do what you have to do to keep yourself well.

      I hope the appt. with the Endo goes well.

      XO Shelly

    • barbara98940
      barbara98940 shellyC19

      Posted

      Thanks Shelley, the irony if it is, he will only be able to give me a 'prescription based' NDT such as WP Throid which is porcine based and I might not be able to tolerate it! (ThyroGold is bovine based). They used to make a WB Throid which isbovine based, but I'm not sure whether they still do. I'll investigate if it becomes necessary to do so.
    • barbara98940
      barbara98940

      Posted

      I really appreciate your comments. smile XO
    • shellyC19
      shellyC19 barbara98940

      Posted

      Hello Barbara:

      You could try what he is allowed to prescribe. Boy they really have daggers out on NDT!!!  I know of the pig's one and of the cow's but the WB Throid, I am not as familiar with. 

      Let me know how it goes with this Endo, and what he can do under NHS. I am interested.

      XO Shelly

    • barbara98940
      barbara98940 shellyC19

      Posted

      Hi Shelley, we are in agreement, I intend to go with whatever NDT he is able to prescribe (if my intel is correct and he is willing and able to do so). It has taken 6 months of research and waiting for appointments to get to this point. I could really do with NHS funding the thyroid ttreatment (as they should). I'll let you know what the result is.
    • shellyC19
      shellyC19 barbara98940

      Posted

      Hello Barbara:

      I will keep my fingers crossed.  NHS should pay for it, perhaps he can write it up as you are allergic to the way the others are made.  Let me know what happens.

      Shelly

    • barbara98940
      barbara98940 shellyC19

      Posted

      Thanks Shelley. If he doesn't prescribe NDT, he is able to prescribe T3 and with my intolerances settling down a bit now my thyroid results are in range I might be able to tolerate the synthetic T3 with the maize starch in it. Otherwise, he has the authority to request compunded T3 to be made up without the fillers. Fingers crossed.
    • shellyC19
      shellyC19 barbara98940

      Posted

      Hello Barbara:

      Wow that would be great if he can have it made without the fillers. Glad you have a back up plan.  Do let  me know how it goes.

      I have a problem with allergies to immunizations.  I am allergic to sulfites.  That is used in a lot of things as a preservative. 

      XO Shelly

       

    • barbara98940
      barbara98940 shellyC19

      Posted

      It's a pain isn't it? I'm intolerant to sulphites and I too have noticed it is used a lot. Hence the reason I'm sticking to fresh foods.
    • barbara98940
      barbara98940 shellyC19

      Posted

      If I forget to update you re visit on 15 Oct, do feel free to prompt me - I've got a lot going on at the moment and may not remember. Thank you for the encouragement.
    • diana80892
      diana80892 shellyC19

      Posted

      Hello Shelly:

      My name is Diana and I live in USA, I just had been diagnosed with hypothyroidism the doctor told me I have high levels of TSH but normal level of t4 and t3. They start testing my blood levels for thyroid in august and everything was normal my TSH level was 0 and for the past months my TSH level went up but my t4 and t3 is normal. On top of that I found out I'm am 5 weeks pregnant with my 4th child. I have depression, fatigue I'm always tired, and nervous and start getting really sensitive to cold and I'm always stressed out. Can you please explain me how my TSH level can get so high in a couple of months but my t3 and T4 is still normal my doctor still didn't give no exact explanation what is basically going on? And my biggest concern is that I'm 5 weeks pregnant and my TSH level is so high,does this going to affect my baby because I read so many articles and they say that if the mother doesn't produce enough hormone in the first trimester of pregnancy when the baby depends on the hormone from the mother it is a big chance of the baby to be slow mentally and even retardation in some cases. Can you please explain me what are the risks for me and the baby with this condition? Forgot to mention the doctor just put me on 0.25 MG of levotyroxine at 5 weeks pregnant. Please if you could give some more details on this condition and how this affects the baby because at this moment I'm more stressed just thinking that something can be wrong with the baby in the future.

      Thank you so much hope to hear from you soon ?.

      DIANA

    • shellyC19
      shellyC19 diana80892

      Posted

      Hello Diana:

      First of all Congrat's on being pregnant.  You will have a healthy baby!

      Our thyroid gland is needed everyday and for the hormones it places into our system.  During pregnancy it is under stress as the baby grows inside you. So is your pancreas and blood sugar.

      Many women get post partum thyroiditis after pregnacy and end up with Hypothyroid symptoms.  So, if your T3 and T4 are normal that is helpful but your sensor hormone the TSH is high means you are starting to go into Hypothyroidism.  So the treatment is a low dose of Synthroid also called Levothyroxine.  25mcg is a starter dose and will help keep you in balance but as your pregnancy advances, you may need more of this medication after they draw blood in about 6 to 12 weeks. They will be monitoring you more since you have high TSH.  TSH means Thyroid Stimulating Hormone and is in flux in the body and it senses a low and tells the thyroid to make more T4.  T4 means Thyroxine 4 and then it turns into T3 called Liothyronine but it is mostly called T3 for short,  in your thyroid gland.  So if your T3 is okay that means your thyroid is working to convert it, but we need proper levels of the hormone everyday.  We can't be too low or too high.

      TSH scale  which is 0.45 to 4.50 in most USA states, if you are on the 0.45 and under, for example 0.17,  you are HYPER or too much thyroid and if your TSH is above 4.50 and above for example 6.0 you are HYPO or too little, so it is opposite of each other.

      The T4 and T3 tests are more accurate and doctor's in the USA will look at all, and will see a more complete picture when they do each test.  this shows how your thyroid is doing.

      Symptoms of low thyroid HYPO are: tired, gains weight fast, no energy, confusion, brittle nails and dry skin, acne, bruising easy,hair can fall out,  depressed feelings, low temp and low pulse, constipation,  brain foggy a lot,  and these are common there are more.

      Symptoms of Hyper (too much) are:  jittery, loose bowels and shaking, feeling nervous, bug eyed or thyroid eye, having anxiety attacks, palpitations, heart problems or fast pulse.  There are more these are common.

      Now as to problems with not enough thyroid hormone, studies done, show a high incidence of Autism or slow learnering disabled if NO replacement hormone is given.  Other forms of Autism like Asberger's has also be noted to happen. Some development milestones could be delayed in the baby if no replacement hormone given.

      YOU MUST TAKE THE HORMONE REPLACEMENT and be monitored for any changes to your T3, T4 level.  A good OB-Gynocologist will refer you to an Endocrinologist who knows the thyroid and specializes in that.

      Many GP's or Inter medicine doctors know about this and can help.  You should be watched by your GP also.

      Please take your Levothyroxine 25mcg without food.   Food will block it! You need to wait about 1 hour before food.  No milk right after it, just water.

      Take it everyday at the same time.  Most people take it early in the morning but some do take it at bedtime. 

      Please keep me posted on here or by private message on how you do.

      Any questions feel free to ask.

      Shelly

       

    • barbara98940
      barbara98940

      Posted

      Hi Shelley, yep i forgot to update you! Because I have intolerances and there are no tests for intolerances, the Clinical Commisioning Group refused to fund any alternative to levothyroxine. So I buy my own NDT (named Thyro-gold) off the internet. I've now been on it for the last 17 months and am getting on great with it. Having to cook all my food from scratch, from fresh ingredients is very time consuming and doesn't leave me much time to be on Patient forums. Take care. x

    • shellyC19
      shellyC19 barbara98940

      Posted

      Hello Barbara:

      Glad to hear from you and keep on getting better.  NDT's work well on most of us. 

      When you have time, keep in touch.

      XO, Shelly

    • Natural4reelz
      Natural4reelz shellyC19

      Posted

      Hello.. I just signed up and seen your post.... I have Hashimotos, and goitors but am not experiencing syptoms of being tired but do have eyebrow loss and recently diagnoised with HCM....

      My TSH is 9.41 High

      TPOab is 900 > High

      FT4 is 0.9 Normal

      Ijust started Thyroid meds a month ago and its called Thyroid something .. Its suppose to be generic for Armour..

      My question is i want to do natural but my insurance is being a nightmare and wants me to do Synthroid which isnt natural..

      By my bloodwork results and goitors.. Ect.. What do you think is best.???

      Thank u

      I dont really want to do the synthroid i want to do natural and also im taking herbal suupplements that i can list if u need..

    • shellyC19
      shellyC19 Natural4reelz

      Posted

      Hello Natural4reelz:

      Myame is Shelly and I am a nurse in the USA.  I have Hashimoto's Thyroid disease since 1987.

      I have been on all of the thyroid meds.  NDT or Arnour Thyroid is a natural thyroid med, made from a pig's thyroid gland which is close to ours.  It is more agreeable with many of us, since it is almost like our human one.

      NDT means Natural dessicated thyroid, it is the original thyroid med.  Around for a long time and much better than synthroid.  It can be prescirbed and you can ask your doctor to file some papework to sk for an exemption to synthroid.

      insurance companies like to push the cheaper made Synthroid and it is purely money driven.

      A goiter is part of an underactive thyroid.  Your labs are off at 9.41 and it should be 0.45 to 4.50 on your TSH  High end which means you are HYPOTHYROID.  It is treatable by rplacing the hormone.  You can also buy online NDT or Armour with a prescription online and avoid the insurance company. 

      Synthroid disagreed with me.  It is T4 and called Thyroxine.  it has to convert in the thyroid gland and become T3 called Liothyronine.  this is hard on some of us to do. NDT or armour thyroid gives you all of the 4 thyroid hormones.  It is better and many ladies on here use it.

      Thyroid meds must be taken on an empty stomach and without other meds or supplements.  You need to space other meds at least 2 or 4 hours away from them.

      Hashimoto's is passed on via DNA and thyroid problems hit during ages of 20 to 45.  Women are effected more.

      Avoid gluten in the diet as it bothers the thyroid. Eat healthy foods and no junk ones.  Your TSH needs to come down to under 4.50 and best is between 1.0 to 3.5.  It is a sensor hormone and is in flux at all times.

      See a diet person or a Naturopath doctor if you need other help with natural meds and diet.  B12, B1 and ferritin a compnent of iron needs to be in good shape for all thyroid meds. 

      I hope this helps,

      Shelly

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