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Can't take it any more!! More than Hypothyroidism?

Posted , 8 users are following.

KLW5
KLW5

Hi, my name is Kelly and I am 23. I have been experiencing some debilitating symptoms since September (although I believe there has been a gradual onset of symptoms from a few months previously). I am yet to have a fully comprehensive diagnosis and I am looking for some advice and support as I am at a point where there isn’t a light at the end of the tunnel.

My main symptoms are currently as follows…

·         Fatigue – I don’t remember the last time I didn’t have this overwhelming tiredness (physically and mentally). Sleep doesn’t touch it and although it seems to get worse with exertion this isn’t a primary aspect of the fatigue (I am tired even when doing little).

·         Muscle aches/stiffness – I feel like a pensioner. Walking is effort, standing up from a chair/getting out of the car takes so much strength and the walk from my car to the office feels like a marathon. I hobble around like a cripple and I am often worried my legs will give way – not really how a 23 yr old should be feeling.

·         Dizziness – I am currently on medication to curb this but I still find my balance is wobbly and I get lightheaded and spaced out.

Other less frequent symptoms include random stabbing pains (usually legs & stomach), visual disturbances (black dots/trouble focusing), nausea/vomiting

 

My diagnosis was Hypothyroidism – not shockingly so but enough to put me on Thyroxine after hearing my families unfortunate history with that damned organ! I am currently taking 50mcg.

My blood pressure is fine, all other bloods are fine and CT/ultrasound of head and neck came back as all clear. The specialists have just sent me back to the doctor and he just thinks that Thyroxine will be the magical cure (if anything I am getting worse!)

Finally I realise the following things have some negative effects but I know it is not just these things so please don’t say it is! I have put on a lot of weight (4st in 4 months - and I was very overweight to begin with! This is partly hypothyroid and partly not having the energy to cook/go and buy healthy food.) I also have depression/anxiety (initially I thought the symptoms were caused by this but now I believe it is the other way round – I am no longer on anti-depressants and don’t feel like I need them. The thing that is causing the depression and suicidal thoughts is this illness) and IBS (which has not worsened).

The way I am feeling is ruining my life. I have taken a lot of time off work (although now I am having to physically drag myself in otherwise I can’t pay rent), I don’t have the capacity to maintain much of a social life and my relationship is taking a bit of a hit. Please – if anyone can offer any advice I would really, really appreciate it! Feeling so alone!

0 likes, 20 replies

20 Replies

  • shellyC19
    shellyC19 KLW5

    Posted

    Hello Kelly:

    My name is Shelly and I am a nurse in the USA. I have Hashimoto's thyroid disease since I was 27 and I am 54 now, so for most of my life.

    Thyroid disease hits in the ages of  20-45 years old.  It can come from a lot of things. One is Epstein-Barr virus also called Mono, another way is a family trait, and another is no iodine in the diet.

    The thyroid makes 4 hormones and the thyroid makes Thyroxine or  T4 and Liothyronine or T3 for short.  Levo (thyroxine) is taken on an empty stomach and 1 hour before meals.  Then your thyroid shuld convert it from  T4 into T3. Someof us can't do that so well. Myself included.

    Now Levo (thyroxine) is not for everyone. Some people need a different type of thyroid medication.  There are several. Thyrolar (Liotrix) is a combo of Thyroxine and Liotyronine. NDT- Natural Dessicated Thyroid hormone made from a pig's gland and is close to a human person's gland. Liothyronine (CYTOMEL) and I take that.

    It takes about 6-12 weeks to see the symptoms go down. You may need a higher dose like 75 mcg or 100mcg,  they draw your blood they can tell if it is working.

    Now many of us are low in Vit D who have Thyroid disease.  So have that tested.  It is a special blood test and if you are low in Vit D you can have severe muscle aches and pains. You can feel really awful.  Also have a mineral panel to include: Poatssiu, sodium, magnesium, selenium, calcium, and ferritin and iron.

    If you have your blood work please post it so we can see what your TSH and other blood work looks.

    Hypothyroid can make you feel depressed and you can gain weight, have no periods, feel cold, feel tired, have a low pulse, have a low body temp, bruising, dry skin, brittle nails.  There are more but these are most common ones.

    Also have your adrenal glands blood cortisol level taken.  Please ask them to check you for LUPUS. It can be similar to thyroid in some symptoms.

    So post your blood levels and we can see how you are doing. Keep us posted on how you do.

    Regards,

    Shelly

  • stephanie1968
    stephanie1968 KLW5

    Posted

    Hi Kelly

    Like you I have put on four stone over 18 month.

    I have aches particularly in my joints and places I never thought I could of before.

    A lot around hips and lower back ....

    Despite being diagnosed hypo in August last year..after 3 months I developed hives was on 100 mcg...Levothyroxine which I think was the cause...I've never been to see the Endocrinogolist as the doctor does everything in house ......finally after much persistence I've got a meeting at the end of this month.

    Regarding my hives the immunology guy said I'm not allergic to milk.......whilst I was dairy free for a month ....that was hard you don't realise how much milk is in things and I was strict ......I was .hive free whilst on H1 n h2 blockers for acid build up ......

    You've got to be persistent.......after he said I wasn't allergic first thing I had cappuccino....day later hives.....

    So I rang the hospital back for a second chance for more tests....awaiting the immunology guy to get back with an appt......

    Apparently I have an auto immune problem.......

    I thought it was my thyroid :-)

    Wishing you all the best ...please dint give up hope x

    • stephanie1968
      stephanie1968

      Posted

      I've also got my doc to prescribe me dairy free Levi which is specially ordered.....he balked at the cost but said if I need It I need it :-)
    • barbara98940
      barbara98940 stephanie1968

      Posted

      Liquid thyroxine is also available. Though it made me swell up. £100 a small bottle!
  • terry74787
    terry74787 KLW5

    Posted

    So I am Hypo as well. This may not apply to you but since most Hypo people have weight issues I want out this out there. Many people use Truvia and drink and eat food that contains Erythritol.  Truvia is 1% Stevia and 99% man made sugar produced with yeast fermentation. After 4 years of neck and shoulder pain and IBS symptoms, I read about Truvia and specifically Erythritol causing my symptoms. Sure enough, they stopped within 36 hours of my stopping Truvia in my coffee, Zero water which also contains Erythritol. My muscle spasms are actually gone after all those years. Don't blame all your symptoms on Hypothyroid like I did....
    • shannon93482
      shannon93482 terry74787

      Posted

      Hallelujah terry74787!  Way to go!  There are so many crazy things in our food these days as well as our food itself being modified.  It's no wonder we're all sick!  Nice detective work!  I wish I could find what's causing my IBS.  I kept a log for a long time and couldn't pinpoint it.  I don't eat or drink anything that has sugar substitutes so I don't think it's that but it could be grains (gluten).  I don't get IBS everytime I eat grains though so it's a mystery.  But when it hits me it's horrible!  Especially when I'm out and about.  It has ruined a few events for me.  I have noticed that when I drink alcohol it hits me.  Perhaps it's some of the grains in that!  I drink beer or Vodka occasionally and it's happened with both so I don't drink much anymore.  I'm convinced that the GMO's have caused this thyroid madness.  It seems that there are so many more people with this problem.  
    • stephanie1968
      stephanie1968 shannon93482

      Posted

      Lol........

      I don't think it's down to substitute sugars either ......

      Possibly because some of us can't convert the sugars ....

      Milk contains lactose which gets converted into lactase or visa versa

      Or wheat / gluten allergy

      Either way we have an immune deficit and possibly all the niggles over the yrs come to the thyroid problem that some of us have

      Inability to sleep

      sweats

      Hair loss

      Joint pains

      Carpul tunnel ...in both my hands

      Feel goofy...foggy even

      Urticaria...hives

      No libido...can say I'm that bothered my fella would disagree:-)

      And too many others to mention......

      It's a long road and there's light so.dwhere just got to be persistent and not give up or in ........

      I had a little more energy I thi k when I was lactose free ....I can't remember ...:-)

    • barbara98940
      barbara98940 stephanie1968

      Posted

      Some I deas to research: 1l histamine intolerance (see allergyuk websites)

      2) soya

      3) milk/

      4) lactose

      5) parasite blastocystis honinis (see nih website)

      If you're allergic/intolerant to corn (like me) you'll find it's in a lot of the antihistamine meds, all the synthetic thyroid meds and some of the NDT meds, which is why I've switched to bovine NDT.

    • barbara98940
      barbara98940 stephanie1968

      Posted

      Hi Stephanie, I meant to add the clarification that corn is the UK name for maize. Maize starch is also in the antibiotics I'm taking at the moment, Erithromycin. As I'm intolerant and not allergic and have cut it out of the rest of my diet, it's only giving me slight eczema.
    • shannon93482
      shannon93482 barbara98940

      Posted

      I'm not sure I have access to Bovine meds at my pharmacy.  My pharmacist only gave me three brands that they carry in my area.  Armour Thyroid, Nature Throid and one other but I think they were all porcine.  What is your medication called and where do you get it?
    • barbara98940
      barbara98940 shannon93482

      Posted

      Its called ThyroGold and I buy it from an US website. I'll send more details when I get chance as it's 1am here in UK..
    • barbara98940
      barbara98940

      Posted

      Sorry, that should have read blastocystis hominis
  • Richard2208
    Richard2208 KLW5

    Posted

    Hi,

    I have Hypothydoidism and when I swapped from synthetic to natural meds i.e desiccated thyriod the difference was profound!

    • barbara98940
      barbara98940 Richard2208

      Posted

      Me too. Great isn't it? I'm on an OTC non-prescription bovine one. smile How about you which one are you on?
    • stephanie1968
      stephanie1968 barbara98940

      Posted

      Prescribed lactose free

      Henning.manufactured in germany....

      My pharmacy dispenser in the drs asked me to picked up personally as very expensive .....unlike the amount of scripts they've used to get to this point......

      Luckily I'm in the UK and get free scripts for being hypo.........

      I've just been to the physio for my back .....cried just about all the way through but he seemed to know a lot more about the physical aspects of joints and places where it affects me and that the psycological aspects were intertwined with the physical ......so when one gets on the mend hopefully the rest will fall into line

    • barbara98940
      barbara98940 stephanie1968

      Posted

      I'm really sorry to hear of your back problems - let's hope the physio pain is worth it!

      I'm in UK too, but because I'm intolerant, not allergic, to stuff, none of the allergy tests showed anything. There are no tests for intolerances. So I'm currently funding the NDT myself because there was nothing they would give me on the NHS. Got another allergy appointment on 18 Jan 2016 but not getting my hopes up. I liked my physio's viewpoint: pain is bad. If an exercise hurt, she would give me 3 others over a period of weeks until I was ready to do the first exercise without pain. But then shoulders may be different to backs.

    • kerry_t3
      kerry_t3 barbara98940

      Posted

      Hi Barbara,  I,m interested  in the OTC non prescription bovine NDT that you  mentioned. I have had a good improvement with Synthetic T3 but it seems to be wearing off and I,m thinking of trialling NDT. I would be interested in finding out brand and costs.  Many thanks, kerry
    • shannon93482
      shannon93482 barbara98940

      Posted

      I'm curious about the non-prescription meds.  I've heard that you have to take a lot more of the tablets for them to be effective.  What is the dosage and how many do you take to feel better?
    • barbara98940
      barbara98940 kerry_t3

      Posted

      Hi Kerry, (and Shannon),

      You know I too was prescribed T3 (liothyronine) and found the beneficial effect wore off. Weird.

      You asked about the OTC bovine NDT I mentioned, it's called ThyroGold. It's no exaggeration to say it's been a life changer for me. Please note it is classed as a nutritional supplement, so that it can be bought without prescription, but given the effect it has had on my thyroid blood tests (done by NHS) it contains what it says it does, natural desiccated thyroid. I'll pm you the website where there is lots of info on:

      - dosing

      - how to spot if you are over/under medicated

      - a symptoms checklist

      - and how to order.

      so that you can make up your own mind whether it is right for you. I followed thyroiduk website on how to start on NDT by starting on a low dose and increasing slightly every 2 weeks (presumably to get your body used to getting T3) - not sure if this applies if one is already taking T3. Given that this medication was my last chance, I was careful to follow the instructions exactly. I have come to the conclusion that the people who don't do well on levothyroxine (i.e. T4 only) are people who don't have a functioning thyroid gland to convert T4 to T3.

      I started on 150mg for 5 days, then increased the dose by 150mg every two weeks. I had blood tests every 4 weeks to monitor the effect as I was nervous about taking an OTC medication off the internet. My NHS GP has been an invaluable source of support throughout, though the decision to take ThyroGold, and the responsibility if it went wrong, was mine. Scary.

      Are you in UK? If so it may help you to know the cost in pounds instead of dollars. Dollars you can see on the website. Based on my order dated 2 Jan 2016 (which included postage and 10% discount for ordering 3 bottles at a time), cost per capsule is: 150mg = 26p, 300mg = 41p. Most people need 300-600mg per day, which is a daily cost of 41p-82p (46p-92p without discount).

      To give you some idea of how this equates to thyroxine dose, when I was taking 100mcg levothyroxine, I weighed 59kg and was taking 100mcg. I need 750mg ThyroGold (when I dropped the dose below this my % iron saturation plummeted). So it costs me £1.09 per day which I think is cheap considering how much better I feel. My joints and muscles now work! smile I've got loads more energy and don't feel freezing cold to the core any more. I've lost 1 stone in weight (though some of this may be down to the restricted, healthy diet I'm required to follow due to the allergies and intolerances I developed whilst on thyroxine). Brain fog has decreased significantly, the remainder is probably due to needing to go to sleep earlier instead of reading this forum! I can't think of anything else to add except to say that I ordered 1 x 150mg bottle of ThyroGold to try it so I didn't waste too much money if it didn't work out.

      I do hope it works for you. Let me know how you get on and if you have any more questions please ask. All the best, Barbara

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