Should I be pushing for t3?

[VanessaB]

I was on 150mcg of thyroxine but my tsh was 0.05 (0.35-5.5) and my ft4 was 15.6 and I didn't feel too bad then the gp reduced my dose even though I felt better than I had in ages aches were a lot better ,not gone but no where near as bad.So he reduced me to 125mcg and I have felt shockingly rubbish so went back he said I focused too much on my thyroid and the aches could be fibromyalgia even though the aches came back when dosage was reduced so he redone my bloods and said I don't need to be on 150mcg as my results were tsh 0.9 and ft4 11.6 I know I won't get t3 off my gps but would t3 possibly be an good option for me.

[humanbean]

Before pushing for T3 you should be pushing for a free T3 blood test. If you had one of those and it was low in range or below the range, it would give you much more ammunition if/when you ask for a change in your medication.

Do you have the reference ranges for your fT4 tests?

[Marz]

Ranges vary - even so your FT4 is going down - which could mean your FT3 is also. As humanbean says you need to have your FT3 tested as it's possible you are not converting the T4 into the active T3. Before accepting Fibro as a diagnosis you may want to read other posts on here about the same topic. Look out for posts by shaws. So type Fibromyalgia into the SEARCH box on the Green Bar and see what pops up

[VanessaB]

They didn't test it this time but it was 4.6 (3.5-6.5) last time my ft4 has never been above 15.6 no matter how suppressed my tsh.Even when my tsh was 4.73 my ft4 was 14.6 (10.0-22.0).

[Hidden]

I agree ...push hard for an FT3 test.......if you haven't seen my own questions and posts here,my main problem has been muscular pain whilst other symptoms are gradually improving.It took 4 months and 2 attempts to get an FT3 test .I have been fortunate to see an Endo who ordered it .Even though I went to the hospital where his clinic is to get it done,the lab still ignored it.The second time I made the phlebotomist aware of that and she wrote on the phial as I told her it was their own specialist who had ordered it and it was important for his diagnosis and treatment.

I go to see him this afternoon to see what happens now.

I feel that it is important to get the full picture regarding the thyroid before moving on to other things....So push hard Vanessa....it's your well being that these people are playing around with and your symptoms are relevant.....after all,we live in our bodies,not in a computer. Good luck.X

[HarryE]

Depending on the range, your t4 is really low, mine was 13 and I felt terrible. I think you need to be back on what you were. Do you have any spare you could bump it up with?

[T3sortedme]

I am on T3 but my TSH has to be below 0.5 (0.1 often) for me to feel well. It seems like T4 was working fine for you at 150mcg until you reduced the dose to 125mcg. Your TSH at 0.9 (previously 0.05) shows a significant rise. Restoring the dose seems the right solution for you. I suggest you ask the doctor to allow you to increase it back to the same level as before for 3 months so that it will be clear what the right dose is. If the symptoms clear, it is the right dose for you. Suggest that from speaking to other patients most doctors successfully treat Hashimoto patients by treating the symptoms not the blood tests. Also tell him that many hypo patients need very low TSH values to feel well as they often have conversion problems so need higher levels of T4 and consequently lower than normal TSH. Good luck

[Kitten-whiskers]

Good morning Vanessa,

T3 is excellent for Fibromyalgia and in my opinion T3 is great stuff if you take it correctly.

It is very powerful and doesn't stay in the body that long, so divided doses can be whats required for lots of us (but not everyone) You can get it prescribed, it took me a couple of years and change in surgeries but it was worth every effort.

Best wishes

[marmaris in reply to Kitten-whiskers]

That is it how do we know if it is Fibromyalgia or Hypo? I am on nhs T3 20mcgs daily which I split twice in the day take 100mcg T4 Levo in the evening. Also taking Vit D from doctor as low. I have aches and pains but do not feel a great deal better on T3. I have also read that doctors fob us off with Fibromyalgia or Chronic fatigue syndrome, when really according to Dr Lowe it is due to lack of T3. How can you possibly decipher what is what?

[Marz in reply to marmaris]

If your Vit D is from the Doc it is probably a combo with Calcium - and may only be 400 x2. This may prove insufficient to help your aches and pains. What was your blood test result for VitD ? also it could be time to slowly increase the T3 dose. rwt3.com may have some useful information.

I'm and ex Fibro gal taking T3 and LOADS of VitD....

You will know if it is Hypo and not Fibro when you are on the OPTIMAL dose for you and the symptoms fade.... Yes you are right many Docs fob people off with CFS/ME/Fibro as it is a boxed ticked and once on your file they will keep referring to it - and nothing else but get in in the way. Have you read Dr Peatfields book ? - there is a whole chapter detailing a good explanation of CFS/ME/Fibro. That will help you to decipher what is what....

[marmaris in reply to Marz]

Hello Marz the doctor has given me colecalciferol 800 iu (20mcg) capsules, and two per day I am coming up to my 8 week mark. My Vit D was 23 but she wants it testing again after 8 weeks which I will do. I have read Dr Peatfields book twice over just returned it to the library, and I have read a lot about Dr Lowe and fibro, both great doctors. When you say ex Fibro do you mean you are now without aches and pains. My left foot kills still, hand injection also root nerve procedure for cervical spondylosis. Where is this all going? Still have weight, depression and low moods after 19 years. On nhs T3 just but feel it is week Endo has just given me it (only took 19 years to get it), although I had purchased Cynomel mexican before and Tiromel, dont feel any of them are doing any good. Back on T4 100mcgs as tsh soared to 29 when I came off it.

[Marz in reply to marmaris]

Yes I am without aches and pains. I take 10,000IU's a day of VitD - and recent blood tests revealed I am not at the top of the range - so have reduced to 5000IU's. It's good for the Crohns as well. I take 37.5mcg T3. Also use B12 patches and take lots of other supplements. VitD is more than a vitamin - it is a steroidal pre-hormone. There are VitD receptors in the nucleus of every cell in our body and is involved in the DNA I have read. There are over 9 trillion cells so that is an awful lot of D required VitD and B12 are involved in so much in the body and new things being revealed all the time..

I was diagnosed with Fibro by a Rheumatologist quite some years before my Hashimotos diagnosis here in Crete in 2005.

vitamindcouncil.org

b12deficiency.info/signs-an...

Have you read - The Vitamin D Solution - by Dr Michael Holick. Full of good information....

[Angel_of_the_North in reply to marmaris]

There is a school of thought that Fibromyalgia and Chronic fatigue syndrome are just improperly treated hypothyroid.

[marmaris in reply to Angel_of_the_North]

Yes I have read this also, so confusing just labelling things differently, I even know people that have been diagnosed this and on various medications with side effects dry mouth etc. Just wish I knew what it really is that is causing it, vit D or lack of it, Hypothyroidism etc etc

[Marz in reply to Kitten-whiskers]

T3 itself may not stay in the body long - but the effects do last much longer. Learnt that little gem on here - think it was helvella - aka Rod....

[eeng]

If it was me I would be considering buying in the extra 25mcg you so clearly need from online somewhere. You know it didn't do you any harm to be on a higher dose. If you get any hyper symptoms you can always stop taking it again.

[shaws Administrator]

This is an explanation of adjusting doses due only to the TSH. Go to date July 15, 2006. (some links within may not work) and January 2, 2002.

web.archive.org/web/2010103...

[VanessaB]

Thank you for all your replies my gp does rely solely on tsh some times he doesn't even test my ft4 he said it is irrelevant.I have got some extra I could top it up with for a while at least then hopefully see a different doctor I am reluctant to accept a fibromyalgia diagnosis as when my dose was higher the a pain was not there but am not sure why the doc would be keener on a fibromyalgia diagnosis.

[Megastar in reply to VanessaB]

I have been given a fibro diagnosis without any proper exploration of my thyroid, which I am now pushing for. I have congenital hypothyroidism, and have been taking levo for 31yrs now without any reassessment, even though I have been symptomatic for about 10yrs. Reading these forums has helped me enormously and equipped me to go and speak to my Dr. I think you are wise to not just accept the fibro diagnosis straight off, until other tests have been done. The thyroiduk.org.uk site has some interesting research on the links between fibro and thyroid, which you may find interesting and helpful.

[puncturedbicycle]

If you were feeling better on t4 it seems more sensible to try to get your t4 raised. Do you have the Pulse article by Dr Toft which says that some people feel better with a tsh under 1?

If your gp says that t4 is irrelevant I think it's time to get a new gp. x

[real_mission in reply to puncturedbicycle]

My tsh is usually 0.02, it did go up to 0.5 and I felt awful

[Jan49 in reply to puncturedbicycle]

The Toft article probably also says that T4 should be at the top of the range or higher. I say probably because that's what his Family Doctor Thyroid book says and I think the article is more or less the same text.

[valjo18]

If you felt better on the 150 dose of levo then before asking for T3 it may be a good idea to ask for your levo to be raised to the previous dose. If you felt you were recovering your gp should not have insisted on reducing it. If I were in your position I would increase my dose anyway regardless of what doc says! I dont think they keep real track of repeat prescriptions so it should be easy to do. My aches and pains reduce on a higher dose than my gp likes me to be on and my hair seems to have stopped falling out as much - I can even see new growth. My tsh is around .01 and t4 about 21, so your t4 of 11.6 is pathetically low and you have proven that it increases with the higher dose and you feel better so it should be a no brainer for your doc.

Good luck

[VanessaB in reply to valjo18]

I too had new hair growth on 150mcg the hairdresser asked me how long it was since I had my baby as he could see lots of new growth.I have started to take 150mcg hopefully he won't notice when I get it renewed early

[dizzy864]

It is worth considering a Vitamin D test. I suffered with "fibromyalgia" for many years. I had already been diagnosed with hypothyroidism. I became very disabled and was in constant pain. I then read on line that, " up to 80% of people diagnosed with fibromyalgia don't have fibromyalgia - they are in fact suffering from a vitamin D deficiency." I had a blood test, was found to be vitamin D deficient and have been taking vitamin D supplements for almost 2 years. I have my life back! The difference is absolutely amazing. I was a classic candidate for vitamin D deficiency having been a vegetarian for over 30 years and yet despite seeing numerous doctors and consultants it was never suggested that I be tested.

In my case the problem is that my body cannot store the vitamin D that it gets from sun light. So don't think that if you get plenty of vitamin D from diet or the sun that you are not deficient.

[salty6]

Hi Vanessa - I have had a total thyroidectomy and now am under a surgeon from now on, GP can't make any decisions regarding my meds, my surgeon put me on T3 after the operation and it has to keep my TSH as low as possible to prevent cancer recurring. In conversation he said he has found that many people feel much better on a combination of T3 & T4, I must say that I do feel better on T3 than I ever did on T4 he has promised to keep me on this or a combination. I think that many of us with underactive have a problem in converting the T4 medication to T3 which will give us the results that we need, this is a link provided by Mary Shomon that you may like to investigate and print off for your GP

thyroid.about.com/od/hypoth...

I Hope you find some help as I suffered for 20 years before I could get any doctor to listen and then the large lump in my neck turned out to be cancer.

[Kernowlass]

I wish GPs would not put down these symptoms to other things! I have been up and down with my hypothyroidism for 14 years along with the meds! The unwell symptoms are the same! Recently signed off work with stress and depression but still feeling crap after two months! TSH 3.7. Saw a differnt GP with symptoms written down she upped my med by only 50mg every other day and the result was mortal service resumed within 48 hours! How can anyone say these symptoms are not thyroid related! I wish something could be done as when I feel bad it effects my quality of life!

[Kernowlass in reply to Kernowlass]

*normal

[Muffy]

Make sure you have your blood drawn as early in the morning as you can and try to keep to roughly the same time for every blood test. You never know, your TSH may go higher. You can argue that the FT4 reading is the thyroid hormone and that the TSH is a pituitary hormone!