Stopped T3

[Pinky3]

Hello,

I’ve been on T3 a number of years, always had the expected suppressed TSH. I have spoken to various consultants and 1/5 agrees it should be suppressed whilst taking T3. My last consultant appointment gave me quite a speech on heart disease and bone loss in the future if I carry on with such a low TSH. He advised me to stop taking the T3 to see if my TSH would “recover”...

I’ve always had various symptoms which didn’t go away but lately these have been questioned as I have been diagnosed with Fibromyalgia of recent. Since having my baby 15months ago I have the weirdest symptoms and wasn’t sure if this was down to my thyroid ? Very velvety skin almost too soft, extremely sensitive to certain noise (metal😬)weight gain despite exercise and calorie controlled plans. Tingling fingers, hair loss or delayed hair growth all over.

Ranges:

Tsh (0.2-4)

T4 (11-22.6)

T3 (3.5-6.5)

Date 1/3/20

19.4

5.7

0.02

175mcg levo x 3 per well 150mcg levo 4 x per week 10mcg t3 per day

13/5/20

20.8

4.8

0.02

175mcg levo per day

Since stopping the T3 I have a few additional symptoms which I assumed was feeling under medicated until I saw my results today. I also question whether I needed T3 in the first place?

My mineral and vitamin checks were all ok and the antibodies for lupus were all negative apparently also.

Even after all these years I still don’t know which level I should be on? I’m scared to drop my current level if that’s what I’m advised by the consultant?

Can anyone advise whether they think these levels are ok or offer any advise on whether I should lower my current dose?

Many thanks 😊

[greygoose]

Oh, yes, you do need to be on T3. Your conversion of T4 to T3 is poor.

FT4 20.8 (11-22.6) 84.48%

FT3 4.8 (3.5-6.5) 43.33%

As you can see from the percentages, the FT4 is a lot higher in range than the FT3. They should be much closer together if you're converting well, with the FT3 just slightly lower than the FT4.

Is your T3 prescribed or do you buy your own? If it's prescribed then whoever prescribes it should know the effect it's going to have on the TSH. And, should also know that if the TSH has been suppressed for several years then it's unlikely to rise however much you reduce your dose. And, that the FT3 is the most important number, and if that is in-range, you're unlikely to be over-medicated and do not need to reduce your dose simply because of the TSH. There is no way I would reduce my dose just to satisfy an ignorant doctor!

[Pinky3 in reply to greygoose]

Gosh that makes so much sense, thank you, I always struggle to tell him exactly what I mean and his power of authority makes me crumble And I end up losing my words! What dose of levo would you recommend alongside 10mcg of T3? Should I continue to on 175mcg? It’s so frustrating trying to make the specialist understand my concerns, I don’t understand why they don’t have this information! The prescription is cancelled so I will have to convince him to reinstate this. His other option was for me to continue t3 but reduce my levo to 150mcg daily. I did say but I’m within range?

Thank you so much for replying

[greygoose in reply to Pinky3]

He has no power of authority, just an air of authority with noting to back it up. He certainly has no in-depth knowledge to back it up, otherwise, he would understand your concerns.

I think continuing on 175 mcg levo is fine, but if he's willing to give you back your T3 and lower your levo to 150 mcg, the grab it! See what happens.

Why doesn't he have this information? Because it wasn't given to him in med school and he doesn't have enough interest in thyroid to have learnt it for himself. I expect he's a diabetes specialist, isn't he?

[Pinky3 in reply to greygoose]

I think you’re right! If he allows the 175 plus 10t3 do you think that would be ok still? I think I’m going to email him to get my points across as that seems easier. Fingers crossed he let’s me have the T3 back!

[greygoose in reply to Pinky3]

I think it would. I'll keep my fingers crossed for you!

[Pinky3 in reply to greygoose]

I’ve decided to email my consultant today, would you have any advice on providing evidence of suppressed tsh so I can back up my theories as it seems they firmly believe in reading solely the TSH. Do you know any scientific articles backing the use of T3 that I could use?

[greygoose in reply to Pinky3]

Off the top of my head, no. But, do a search on here, there are lots of links on various threads that would back up your case. SlowDragon , can you help with links, here, please?

[SlowDragon Administrator in reply to Pinky3]

Indepth research into T3/NDT - very positive

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/298...

[SlowDragon Administrator in reply to Pinky3]

And these

nejm.org/doi/full/10.1056/N...

pubmed.ncbi.nlm.nih.gov/825...

endocrine-abstracts.org/ea/...

Some patients use liothyronine as thyroid replacement therapy as an alternative to L-thyroxine. Trials have examined the potential benefits, but there is little data looking at the relative safety of these two agents. All patients receiving thyroid replacement therapy between 1993 and 2014 in Tayside were included in a cohort study (n=34 355; 319 500 patient years of follow up). Overall 33 955 patients received only L-thyroxine, and 327 received liothyronine in combination with L-thyroxine and 73 on liothyronine alone (total=400). Using unique patient identification numbers, biochemical, prescribing, hospital admission, radioiodine and general registry office data were linked.

Patients initiating treatment with liothyronine were younger (48 vs 59 years P<0.001), but there was no gender difference (85% female vs 82%). They were more likely at baseline to have had thyroid cancer, have a history of previous hyperthyroidism and be treated with anti-psychotic or anti-depressant medication. They were less likely to have cardiovascular disease or be treated with a statin. During a mean follow up of 9.3 years (±5.6 years) proportional hazards ratios (HR) were reported after adjustment for age, gender, baseline TSH, number of thyroid prescriptions and history of thyroid cancer or hyperthyroidism.

For patients taking liothyronine there was no increased risk of death (0.78; 95% confidence interval: 0.54–1.11), fractures (HR 0.79; 0.49–1.27), atrial fibrillation (HR 0.91; 0.47–1.75) or cardiovascular disease (HR 0.90; 0.42–1.92). There was an increased risk of mental health disorders (HR 3.27; 1.02–10.52) for patients taking liothyronine alone, but not for those taking a combination therapy. There was an increased incident use of anti-psychotic medication (HR 2.26; 1.64–3.11).

No increased risk of fractures or atrial fibrillation in patients taking liothyronine compared to L-thyroxine was demonstrated. There was an increased risk of mental health disorders if liothyronine was used alone.

[Pinky3 in reply to SlowDragon]

Excellent, thank you for linking these 😊

[SlowDragon Administrator]

Please add most recent vitamin results and ranges ....were these done since dropping T3

Frequently vitamin levels drop significantly when T3 is withdrawn

What vitamin supplements are you currently taking?

Presumably you have Hashimoto’s...conversion of Ft4 to Ft3 is often poor with Hashimoto’s...which is why so many Hashimoto’s patients need addition of small doses of T3 alongside levothyroxine

You will notice that a TSH hasn’t moved at all and would be unlikely too either

If you remained on current dose of just levothyroxine, highly likely Ft3 would continue to drop at each test

[Pinky3]

Unfortunately my last test for these were in March. I take cyanocobalamin as my results (I felt) we’re in the lower end and I’m assuming it’s higher since taking feom March. The b12 result was 320 (211-911). I don’t take any supplements apart from this, I sunbathe without cream to get my vitamin d. I have enquires about hasi but the doctor said my antibodies didn’t indicate this? Perhaps I will lay for a private test for my vitamin and minerals?

My ferritin was 27 (10-291)

Folate 7.8 (3-14.4)

I had my antibodies test a long time ago and these were low.

So frustrating that you can’t test at home and get instant results like you can with diabetes glucose levels.

All good things to note and tell the Endo.

Wish me luck

[Angel_of_the_North in reply to Pinky3]

Awful results there. Ferritin needs to be about 70 (at least), folate pref into double figures and B12 top of or over range (under about 550 you can get neurological symptoms which might be permanent). Many people can't use cyanocobalamin (or folic acid for folate), so don't assume your levels have risen - sublingual methylcobalamin is better. You can't get instant results but you can test at home with a finger prick test

[Pinky3 in reply to Angel_of_the_North]

I rang the doctors this morning and asked about the b12 result and she said it’s within range and fine, it’s hard to argue so I’ll just source better supplements myself. She did say the ferritin looked low and I should take some iron. Perhaps the symptoms I’m feeling are all related to the ferritin? She is testing prolactin as after 5 months of not breastfeeding I’m still producing milk, I’ll be glad when I get to the bottom of a treatment plan that’s gives me some normality! Where’s best to get this finger prick test? Thank you 😊

[SlowDragon Administrator in reply to Pinky3]

Recommend getting FULL thyroid and vitamin testing including BOTH thyroid antibodies

Vitamin levels need to be optimal on replacement thyroid hormones

GP is not obligated to treat anything apart from vitamin deficiencies

Optimal vitamin results are

Vitamin D at least around 80nmol and around 100nmol maybe better

B12 at least over 500

Folate at least over halfway through range

Ferritin at least half way through range

High prolactin linked to autoimmune thyroid disease

Iron and ferritin are complex. Ask GP for full iron panel test for anaemia.

[SlowDragon Administrator in reply to Pinky3]

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

[Marymary7]

Tingling fingers is or can be a sign of Pernicious Anemia or a B 12 deficiency. Taking cheaper cyanocobalamin is not the best supplement, it could be you don't use it well and you need Methylcobalamin.

[Pinky3 in reply to Marymary7]

I assumed these tablets were a good form as they were from the doctor! What brand would you recommend? Thank you

[Marymary7]

I use Better You B12 Daily Oral Spray. It absorbs under your tongue in case you have absorption issues. I have used little tablets that disolved the same but can't remember which ones. Just look for Methylcobalamin on Amazon. The doctor so often gives the cheapest items.

If you go on the sister site on HU called Pernicious Anemia you will see how closely these two problems often cross over.

Good luck.

[Pinky3 in reply to Marymary7]

Thank you 😊

[NWA6]

I’ve been on combo for just over a year now after 10yrs of Levo only and never feeling optimally treated. I found that it was my conversion and not the amount of Levo that was the problem. I was in 175mcg before that, my FT3 still did not raise above 3.5 (3.5-6.5) and yet I felt jittery and anxious.

I reduced to 150,4 days a week and 175 3days a week as I was tweaking but then I saw an Endo who recommended T3. I reduced Further to 125 4days and 150 3days and added 5mcg T3 x3 per day. Then I raised to 20mcg (10mcg x2 per day).

So that I don’t get 25mcg tablets as they are often Teva or a different brand I take 150 x5 days and 100 x 2 days.

All of your symptoms were mine too. My B12, Vit D and folate were low, I stopped supplement after 4mths and those symptoms came back again. So I will always have to supplement despite a good diet. Thyroid symptoms have not returned since adding T3. I have had a weak pelvis since the pregnancy of my 2nd child, and my knees feel arthritic but I believe that that damage was done whilst not being properly medicated for 10yrs. I darent raise it with my GP or they’ll probably try and tell me it’s the T3 😩 it’s very frustrating that I don’t think I’d see my GP about much of anything for fear that they’d blame it on ‘over’ medication which is complete nonsense as I’ve never been healthier or happier 🤗

[Pinky3 in reply to NWA6]

That’s so reassuring to hear your story I was starting to give into the repetitive nonsense about my tsh/T3/over medicated etc. It’s felt easier to agree as I didn’t have the scientific knowledge to back up why I was arguing with every professional. I was actually told that o should stop looking for issues as to why I’m feeling crap still, as things will appear abnormal sometimes and that’s life, I felt like a hypochondriac!! It’s hard to get your voice heard. It’s frustrating that with each test it comes back with the side note of abnormal, over medicated etc. I will buy the supplements today and wait to hear from the Endo so I can push to keep the T3 and perhaps lower the levo? Here’s to getting back to being a fit mum 😊

[NWA6 in reply to Pinky3]

🤗 I really feel your struggle, I felt like that for years!! Being told I was ‘in range’ and therefore there is nothing thyriod wrong with me. They tried to pin ‘fibromyalgia’ and mental health issues on me 😩 So utterly shattering to fight with them when I too don’t feel I have the education or intellect to make them understand what I’m saying.

Going on what you’ve said, I would know my Vits/mineral numbers, supplement what you need to and then if needed I’d raise the T3 mine is currently 6.58 (3.1-6.8) so much higher than GP’s can handle and yet it’s right for me (94% through range chorobytarczycy.eu/kalkulator )

My T4 is too low but I don’t know what this means as my FT4 is ok at 17 (12-22) and that’s not a bad result whilst on combo but I guess that’s because I didn’t allow my Endo to decrease my Levo too much just because I was taking T3. My TSh is 0.005 which makes my GP shudder 😂

I’ll be honest with you, I don’t think you’re going to get your T3 back with this current consultant, I think you’re going to have to find other avenues 😞 The fact that he wanted your TSH to recover suggests that he wasn’t the right guy for you in the first place 😞