I was diagnosed with Hashimoto’s in 2004 following a hemithyroidectomy. My thyroid was scanned this year and they say there is no thyroid tissue left. Currently taking 150mcg TEVA Levothyroxine daily. I’ve been refused T3 on the NHS even though I don’t feel well. Anyway, I took matters into my own hands and had this blood test and I will go private if I have to. I knew my Vit D was low and these are in hand. So my questions are:
1) Should I be taking T3?
2) If I switch T4 brand would/could these results change/improve?
3) If I have no thyroid, should the NHS supply me with T3?
4) Based on these results, is there any point in taking the D102 gene test (I ordered it but haven’t received it yet)?
5) Is there a way to reduce the rT3 (presume that would help me feel better)? I’m not sure how it’s formed.
6) Is there any point trying to reduce antibodies if my thyroid is all destroyed now? Can they attack other tissues? I’m also concerned about parathyroid as I’ve had some elevated blood results - could that be affected by these antibodies?
Thank you, very much(!) for any help you can offer 🙏🏻
TSH 1.09 (0.27-4.20)
Free T4 19.4 (12.00-22.00)
Total T4 93.7 (59.00-154.00)
Free T3 3.93 (3.10-6.80)
Reverse T3 22 (10.00-24.00)
*Reverse T3 ratio *11.63 (15.01-75.00)
Thyroglobulin antibody
37.30 (0.00-115.00)
*Thyroid Peroxidase antibodies
*79.4 (0.00-34.00)
Active B12 48.1 (25.1-165.00)
Folate (serum) 11.7 (2.91-50.00)
*25 OH Vitamin D *30.2 (50.00-200.00)
<Insufficient D - 25-49>
CRP high sensitivity 0.1 (0.00-5.00
Ferritin 26.1 (13.00-150.00)
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Hashi68
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Those results are very difficult to read because the writing is so feint. It would be a good idea to type them out. But...
1) Yes, your conversion is very poor.
2) Who knows! The only way you will find that out is to try. Lots of people don't get on with Teva, but that is because of the fillers. I'm not sure it affects their blood test results.
3) The NHS is a law unto itself, and totally disregards what it should and shouldn't be doing. In an ideal world you would automatically be given T3 in some form, but this world is getting worse and worse, so don't hold your breath!
4) Depends what you want to get out of taking the test. If it's for your own information, go ahead. If it's to try and convince your doctor to give you T3, best to spend your money on buying your own T3, because it's very doubtful your doctor will understand it, know anything about T3 or have ever heard of this test.
5) It's unlikely reducing rT3 will make you feel better. It is inactive and doesn't cause symptoms. Your rT3 is too high because there is too much unconverted T4 in your system. To reduce it, you need to lower your dose of T4 and add in some T3 to increase your FT3 level. It is low T3 that causes symptoms.
6) If you still have elevated TPO/Tg antibodies, it means there is still some thyroid tissue for them to attack (sorry, couldn't read the results). When the thyroid has completely gone, the antibodies will go. Hashi's antibodies only attack the thyroid, nothing else. The best way to control them is to keep your TSH suppressed. And, the best way to do that is to take T3. So, it really does look like you need to get yourself some T3, if the NHS won't play ball.
Thank you I could see the results on my phone ok, but I will write them out myself for you/anyone else reading this in a separate comment/edit (I’m new to HealthUnlocked)
1) I’m happy to know conversion is poor because the labs(Medichecks) didn’t seem to comment on this. The seemed happy most things were in range, but I thought only just within and I’m not well.
2) Yes, I was thinking about fillers, but presumed it wouldn’t improve my blood results. I’d love to know for sure (like do fillers affect absorption and therefore would make you unwell due to actual changes to bloods) I had to up dose from 125 to 150mcg as soon as started on TEVA but never felt ‘right’ even on higher dose.
6) I gather taking T3 suppresses TSH (which doctors don’t like) but I didn’t know this reduces antibodies (so much to learn!)
I wanted to know that (in all probability) what I lack is sufficient T3, as it’s going to be costly and I don’t want us to be spending money we don’t have if it’s not the best plan. Thank you greygoose for your very thoughtful reply. It’s really appreciated. 😊
2) If fillers affected absorption, it would show on your blood test results - i.e. your FT4 would be lower. Your results say that you are absorbing T4 well, but you aren't converting it. And, that has nothing to do with fillers. The problem most people have with fillers, is being allergic to them.
I am sorry you aren't feeling too good and probably some T3 would improve your health as doctors wont because your TSH is around 1. Research has proven that most feel better with a T4/T3 combination. I'd source my own and add to a reduced T4. It wont do you any harm and if it relieves your symptoms that's the aim.
I have my thyroid gland, I was more unwell on levo than before being diagnosed but on T3 only I have relief of all symptoms and am well.
Thank you! Yes, I have been battling with doctors for years and am now taking control over my health because in June (after finally getting a one off referral to an Endo - the ONLY time I’ve seen one since 2004!) I was told by her that some patients don’t do well on hormone replacement, that she believed T3 was no more effective than placebo and that I should go home a grieve for the person I used to be! I waited 13 years to be told that anti depressants from the GP were my only option! So, me and the NHS are done! Sorry for the mini rant, but, 6 months on, I’m still absolutely fuming! 😊
You are entitled to be fuming - an Endocrinologist who isn't au fait with clinical symptoms as I believe, by reading posts, on here and people have been undiagnosed or on too low a dose of thyroid hormones is probably only dealing with diabetes patients.
I am still fuming and I was diagnosed ten years ago. That you can suffer unnecessarily and been given different diagnosis with treatment except the one you really have. I self-diagnosed and doctor phoned me at home and said 'who gave you a blood test form' I said 'I did' and she said come and get a prescription you have hypothyroidism. I couldn't collect as was far too unwell by this time but I cried as I now had a diagnosis after all the other diagnosis/treatment for things I didn't have.
Considering also that hypo is not a rare condition. It proves that all doctors are very poorly trained and unaware of how disabling hypo can be if undiagnosed.
I believe females are the largest group and we are treated mainly by males many of whom seem to be arrogant and treat us as if we are very temperamental and don't have a brain.
One of our doctors (Virologist) tried to have a Conference and invited every single Endo in the UK as the situation was parlous for thousands of people who were undiagnosed or given too low a dose of thyroid hormones.
The virologist prescribed NDT or T3 added to T4 or T3 only for patient who didn't recover on levo. For this he was reported by ??? and it certainly wasn't his patients to appear before the GMC several times and we, his patients, believed it was due to all of these appearances that he had a stroke. He wasn't afraid to tell them they were wrong in their attitudes and stupid rules.
The fact these are all so low suggest you have malabsorption issues and/or low stomach acid and probably leaky gut. So I would suggest you do seriously consider strictly gluten free diet for at least 3-6 months.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
If you have only recently changed to Teva then you might consider changing back to previous brand
Very many people don't get on with a Teva and very people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Presumably you did this?
Yes doing DIO2 gene test is definitely worth doing.
Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org
Thank you - loads of info there! I have phased gluten out though it’s not been 3 months yet. I have a magnesium supplement and probiotics. I am a vegan so I won’t be adopting the full Isabella Wentz approach, but I will certainly use what I can. It will take me a while to work through this list, so I know I’ve missed a few things here....but I’ll keep at it! 😊
Yes, I supplement B12 - though I stopped everything a few weeks before the blood test so this first one was like a clean base line reading, so everything will be as low as possible. I know B12 has a long half life, so that stayed in range I guess. I wanted, as far as possible, to see what supplements I really need - though I know B12 and D are essential. I intend to get my full vitamin/mineral profile done ASAP to get a full picture of what I need. Some of what I take is because I’m vegan and some because of my thyroid. I’ve certainly been trying to improve things, but I still don’t feel right 😊
My full list of supplements at present is:
Prescribed Ferrous fumarate liquid 140mg (which is 1/4 of the dose because it upsets my stomach so much)
Vitamin D Oil 2500iu
B12 oral spray 1200mcg (with chromium 40mcg)
Optibac oral probiotics 50 billion
Magnesium citrate 400mg
Zinc 30mg
Selenium 100mcg
Vegan EPA & DHA Oil (omega 3,6&9)
I’ve been on these a few months but not taking every single day and off for a few weeks prior to my planned vitamin blood tests. These supplements are very expensive so I want to have a screen to see what I really need to be taking....also I’m not sure which things to take separately for better absorption. It’s all very confusing!
Yes, I took the test first thing and I take my levo at night so I’d gone slightly over 24 hours from previous dose (I skipped the dose the night before the test until after bloods were taken)
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