having symptoms of hypothyroidism

Thanks for your reply.  I looked at the NICE guidelines and it does say to repeat the bloods after three months so in September it will only be two months.  I think because my GP seemed so certain my symptoms weren't due to thyroid problems, I felt a little confused.  I guess I wondered if other people with a TSH in that region felt awful too.  I will keep you informed.

Something else to consider is whether your body is converting T4 to T3. This can be established by doing a blood test for T4 and T3 at the same time so you can see what the levels of both these thyroid hormones are at the same time. If T4 is in range and T3 is low this could be an explanation.

Ok thank you, GP might have told me T3 but I didn't write it down!

This is something you would need to suggest gently to your doctor as T3 isn't one of the normal tests for thyroid disease. Trouble is, the symptoms you describe can be for many medical conditions (which is why thyroid disease often gets missed).

Hi Shelly, thanks for the advice, guess I will no more after second bloods, Pat

Hello Debra:

You are correct, if you have NO Thyroid you will find it harder to regulate. I am a nurse.  In a person with a thyroid the body is to take T4 and make it useable T3 but if you have no gland left, it will not do this.  You may need just T3 (Cytomel also called Liothyroinne)  and very little T4 since you won't convert it.

Also all of the thyroid meds are not timed released and that makes our body take the dose all at once.  It really bugs me that the med is not timed released since our body does not make all the hormone at once. Our thyroid makes the hormone in small amts. over a 24 hour period. So just that can make you swing hyper to hypo.

Anyway it is harder to regulate and a real struggle to keep it at proper levels. XO Shelly

Thank you. I'm going to take one day at a time and hope for the best. 

 

There is another chance of converting T4 to T3 even in the case of complete thyroidectomy, this is the liver - and other peripheral organs. You will, however have to make sure you have all of the catalysts (AKA enzymes) present in your system. Most importantly selenium, for this you can eat two Brazil nuts per day. Other catalysts are zinc (eat Cashews) Ferritin (eat red meat - sorry vegitarians) and Magnesium and Potasium (most veggies, certainly Avocados).

Amour Thyroid will provide you with about 8 hours of T3, then you drop below a critical value - which isn't necessarily it's half life, it's what you can tolerate as a minimum. Regarding the half life of T3 I have read that it is 4 hours and 24 hours -any clarity on this would be appreciated). My critical point seems to be 8 hours. The trick to "stabilizing" this is to take PART of your dose just before lunch, because it is supposed to be taken on an empty stomach. The main dose, of course, is taken one hour before breakfast.

Hello LAH:

I agree with above regarding liver and diet.  It is really so much harder for people who lost the thyroid gland.  It can take longer for them to make it useable.

Yes, diet and having proper minerals is so, so  important.  Most people are low in iron and zinc & even potassium. I take a multi-vitamin and extra Vit D as we tend to be low in that.  It makes a huge difference if you do.

Half life of it would be 4-6 hours as it is excreted in most adults, and in the elderly most likely 6 hours, as they have a slower system. 

Yes, to taking some in early morning and some later in the day.  That would keep levels in the body much better than once in a.m.  

I was on Armour Thyroid, (I liked it and it was hard to get from local pharmacy),  but I am now on just T3 Cytomel and it works on me so much better.  Before my labs would be all over and now my TSH & T3 are so good.  It took years for me to get one that worked on me.  I hate to see people have to suffer and fool around with a med that won't work on them.   XO Shelly

Thx for the verification on  the half life of T3.

It drives me crazy too to read posts here from so many people suffering from incompetent care. I trusted a doctor for 2.5 years thinking that she was all knowing on this subject and I couldn't understand why I was feeling so very ill. I had never studied biology nor organic chemistry but after 2 years I realized my life depended upon knowing what was going on with me. I got so ill I thought that I was going to die. I read and read and studied as if a PhD depended on it. It was then that I realized how ignorant my Endo was (yes, Endo, not even a GP). When I thought I only had about 2 weeks of energy left in me I fired my Endo and went from door to door asking for any doctor who would let me try Armour. Finally I got one and now I am pretty much normal - and really angry at this whole system. I feel as if I have had two years of life robbed from me - and all because someone who was called a specialist, wasn't.

Hello LAH:

I spent years misdiagnosed also.  I started showing symptoms at puberty.  Then I was in Nursing school in college when my professor noticed my goiter. That was 1981.  It took me 6 more years and a great GP, who also reads and keeps up with all of the medical journals.  He said:  "i have to have blood done -STAT!"  I had no T4 at all I was working a lot and was always tired, and he started me on Levo. Levo did nothing, my TSH low , and would not get to normal. it gave me an irritable bowel.  He switched me to Thyrolar, nothing worked there,  & then I went to Armour and my TSH got better. 

Then it was hard to get Armour in the pharmacy.  It made me feel good.  Then after trials - my doc read about Cytomel.  Just T3 and it helped even better.  I went to an Endocrinologist who was supposed to be the "Cat's Meow" and when I walked in the office, he had posters of the body & thyroid and each one said "compliments from Sythroid",  which is the brand name for  LEVO.  I said to my hubby, UH-OH, I am in trouble here!  LOL.

( I swear the Synthroid/Levo company must give these Endo's a 2 week vacation to the synthroid Mansion).

I could not believe it but everything was from that company!  So I meet with the doctor, and he leans over to me, and says, " He got a fax, saying, Cytomel will not be made anymore and you should go onto Synthroid, (LEVO)."  I almost fell over!  I explained I was not converting T4 and he said, "That is not possible."

Here he was telling an RN a lie!  The pharmacy never said that and I spoke to the pharmacist about that.  I got up and left.  I told my GP and he was shocked.  He prescribes it, he never got a fax!!!    LOL. ...Anyway it has been over 7 years, since that encounter and Cytomel is still being made!

I agree - read everything and get your knowledge on.  I too had to learn so much, stuff they never told us in Nursing school.  Today they test young women, which they did not do in the 1970's.  They know more and finding the right doctor is paramount. 

I feel for so many on the forum and I try to help where I can.  I feel a loss of many years too.  Sadly some doctor's are awful.  They do not know about thyroid disease.  I stick with my GP for about 30 years now. 

I heard that some online pharmacies are not even asking for a prescription for thyroid meds.  So maybe some people can do that. Anyway, I am glad you found Armour Thyroid and keep getting better. XO Shelly

I know how you feel. I've struggled through the last 20 years. As a result of needing extra thyroxine just to be able to 'not be a zombie' (which meant permanently suppressed TSH) I now have a number of rare autoimmune medical conditions, allergies and intolerances. I post this as a warning to others: beware permanently suppressed TSH, more thyroxine is not the answer - there is something else wrong!! In my case it was not converting T4 to T3. If this sounds familiar, take action. Get it investigated. If no luck, try NDT (natural desiccated thyroid).

I'm really glad T3 is workig for you Shelley. Unfortunately, I am intolerant to the fillers they put in the synthetic T4 and T3 tablets. So I'm now on ThyroGold, an NDT, with a very supportive GP backing me. He is staggered at the difference it has made. It's early days yet as I only started it on 23rd June 2015 (so I've been on it just over 2 months) and I'm still juggling the dose but the improvement is awesome. So far, so good. Fingers crossed.

I didn't know thqt and have independently verified that I need the second half of the daily dose of NDT about 6-8 hours after the first half of the daily dose (dependent on what I've been doing).

Hello Barbara:

Oh my,  I heard about that with Levo, and others.  I am allergic to the way they make vaccines (sulfites as a preservative).  I hope ThyroGold works on you.  I know how you feel.  I used to think my name and picture was in the dictionary next to complications or adverse reactions!

Keep me posted on how it works, you are lucky to have a good GP. Thanks Barbara for your help on this forum and for sharing, I feel like I know you.  XO Shelly

Hello Barbara:

That will work.  It is good to have it spaced in that way.  Sadly doctors don't explain any of this to their patients.  I found asking the Pharmacist helps.  Also some other meds can interfere with the absorption of thyroid meds, as they compete for receptor sites in the gut. It sure is complicated.  XO Shelly

Shelly,

Your story was so interesting to read, Oh boy can I ever relate to it. The poster on the wall was hilarious. The GPs and Endos are SO uninformed. To save them keeping up to date with all of the research they are "slaves" to the American Thyroid Association (ATA) who have done research and put out the recommendations. The problem is that I believe that the drugs used to work when ATA did their research. ATA is also beginning to recognise that some people do not convert T4 to T3 effeciently (maybe not at all!). But they move in such baby steps and are so afraid to change the recommendations that people like you and me have to suffer while they catch up.

Great story, thanks

LAHs

Thanks Shelley. I think you do a great job on this site. It's really good to swap what we've found out and I value your medical expertise as my background is in IT, engineering and project management.

Hello LAH:

Sorry for the delay in my reply.  I  know these organizations/Associations try and set the recommended values and pick a favorite drug and that is it!!!

They (ATA) have a committee who sits at a table and I bet nobody on this committee has Thyroid Disease! 

I so agree,  most  Endo's are poorly informed and sell out to the pharmaceutical companies in a flash.  Sadly, most GP's just don't know enough and that creates misdiagnosed or poor care for some and the cycles repeat. 

Stay well, XO Shelly

 

Hello Barbara:

Sorry for the delay in my reply.  I agree, swapping information and being able to talk to people who have the same disease is wonderful.  I had nobody in the 1980's. When people would notice,  I put on weight, and you would try and tell them, you have thyroid disease, they never heard of it and looked at me funny.  I felt like I was on another planet. 

Well you know a lot now and do a great job answering people.  I really am glad I found this forum.  XO Shelly