Thyroid UK

NHS Endocrinologist

I have seen a local NHS endocrinologist who still holds on to the belief that autoimmune thyroid disease cannot be reversed and that the only treatment is to increase levothyroxine to lower TSH and it doesn't matter how high the dose is as long as the TSH isn't suppressed. He didn't test my T3 [which, when done at my surgery is 2.2 pmol/L and decreasing], antibodies or reverse T3. He is quite happy for me to fund my own T3 containing medication and will prescribe it privately. Considering that it is T3 and not T4 levels that depress TSH, and it appears that I may have a conversion problem, his protocol will never work and he is doing all his NHS patients a gross disservice.

I would like to find an endocrinologist who works for the NHS in the Sussex area who is willing to prescribe T3 containing medications please.

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email louise.roberts@thyroiduk.org.uk who has a list of sympathetic Endocrinologists.

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Shaws, the email address you've given is out of date. Louise's current email address is :

louise.roberts@thyroiduk.org

But I don't think Louise deals with the medical people list any more, instead people need to email :

dionne.fulcher@thyroiduk.org

These email addresses can be found on this page :

thyroiduk.org/tuk/About_Us/...

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I contacted Louise at the given address and she sent me the list of Private/NHS Endos and Private GPs & Practitioners

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Thanks, I appreciate your comment and realise it should have been to dionne.fulcher@thyroiduk.org

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Endocrinologists seem to only take notice of the TSH but this may interest you.

healthunlocked.com/thyroidu...

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Thanks.

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I don't know anyone in Sussex, but this woman has a lot of good information about reversing the disease. thyroidpharmacist.com

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Thanks. I have done a lot of reading and listened to Isabella Wentz on various thyroid summits as well as Alan Christianson, Tom O'Bryan and many others. stopthethyroidmadness.com/ has a lot of useful info. I have been seeing a private doctor who can prescribe natural thyroid medications and I will have to go down that route but I was hoping to find an NHS endo who would be willing to do this but it seems very unlikely. Forums are full of comments about endos who are hopelessly out of date and ignorant of current research.

I did temporarily take some ERFA [Canadian natural thyroid and did feel better but came off it to prove that levothyroxine only won't work for me] The latest problems with NICE and stopping T3 prescriptions are all to do with money but they are only guidelines and endocrinologists can prerescribe T3 containing meds if appropriate. Once the investigation into Concordia overpricing liothyronine is settled perhaps it be easier to obtain it on the NHS.

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Damage to the thyroid done by an autoimmune condition cannot be reversed (although transient thyroditis does reverse). The autoimmunity will die down in time.

High doses of levothyroxine (or any thyroid hormone) can be harmful even if the TSH isn't suppressed. It depends on the individual and in some cases it is necessary to have a very low TSH.

T4 lowers TSH, the pituitary is highly effective at converting T4 to T3, even if peripheral tissues have problems.

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Thanks. My 23andMe analysis also indicates conversion problems but my endo is totally uninterested in that. He is stuck in an out-dated method of treatment when wearing his NHS hat as he seems happy to prescribe natural thyroid meds privately. My TPO antibodies are not high and I feel that once the cause can be identified [possible stress and toxicity issues] that the autoimmunity will improve.

I just want to get the T3 containing meds on the NHS, which should be available to all who need it.

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If you have written proof that you have conversion problems (T4 to T3) then you should be able to get T3 tablets on the NHS. That is exactly what happened for me. I paid for the Regenerus Lab DIO2 thyroid genetic test, it returned as a faulty thyroid gene from one parent, I printed out a few copies, waved one in front of my GP and another in front of an endo. I was then given 6 months T3 supply on the NHS.

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Thanks. I mentioned it to the endo but he wasn't remotely interested. I may have another go if I see him again but I am thinking of asking my GP for a 2nd opinion from an endo in a neighbouring trust who has had some favourable comments.

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If you do have written proof of a DIO2 genetic fault, then that endo is being downright negligent if he is ignoring it. He most likely doesn't understand what is written on your result.

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I saw an NHS Endocrynologist a couple of years ago and all he said to me was my Symptoms (I have all Thyroid symptom and take Levothyroxine and had a Thryroidectomy in 1989) are due to being overweight and my tablets I take ?? and kept on about diet - I am sure he must have been a dietitian and not an Endo. It was a waste of time and I am still suffering.

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Sorry you are still in trouble. Private treatment may be the only answer.

I'm trying to find an NHS endo who isn't stuck in the dark ages but I think it is probably highly unlikely.

I see a private doctor and I will probably have to fund the T3 containing meds myself until, hopefully, the NHS gets up to speed. If you are still suffering there is a private doctor, Bernard Willis, who practices in London and Winchester drbernardwillis.com/ who I have heard is very good and I am thinking about seeing him. At present I see his partner in Chichester but he is more of a homeopath but will prescribe natural thyroid.

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Guineapiggy,

Levothyroxine will also suppress TSH if you take enough of it.

If you post your recent TSH, FT4 and FT3 results and ranges we can tell you whether you are optimally dosed and whether you are a good or poor converter.

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The results of my last few test results since I have been taking levothyroxine alternating 100 mcg with 75 mcg.

TSH FT4 FT3

Range 0.35-5.00 miu/L 9-19 pmol/L 2.9-6.1 pmol/L

29.09.17 11.9 12.5 Not requested by endo

27.10.17 5.8 15.1 2.2 [GP test]

This is the lowest I have seen my T3. When I was taking the same dose of levothyroxine in 2015 I felt fine [TSH 1.7, FT4 13.5, FT3 3.9].

Gradually it felt that it wasn't working and in 2016 T3 fell to 3.1 and TSH went up to 4.9.

I started seeing a private doctor and he did start me on a small dose of ERFA [15 mg/quarter grain] to use with the levo. This really helped but I wanted to see if increasing the levo would have the same result so I stopped the ERFA and went on 100 mcg levo daily but I felt worse and started getting palpitations but my T3 was still around 3.7 so I had to assume the palps were due to too much T4. For the rest of this year I had been varying the doses of ERFA but the private doc didn't want me to take more than one grain in case it suppressed my own thyroid function.

I'm certainly not optimally dosed and I feel that I need to increase the ERFA and decrease the levo or come off the levo completely and go on 60-120 mg/2-3 grains of ERFA.

Other tests have shown other things going on with progesterone/oestrogen, possible adrenal issues, high arsenic and mercury levels and non-metal toxins [organic acids test and toxic non-metal chemical profile] and T4/T3 conversion problems [via 23andMe test] Not sure if I'm over-testing as it throws more spanners in the works but I think I need to do the Medichecks complete thyroid check as I can't get a reverse T3 test from my GP and the endo won't do it and I need the FT3:rT3 ratio.

I just feel that I shouldn't need to do all this myself. The NHS is letting it's thyroid patients down, not just because of the current Concordia overpricing scandal but because the endos are not using current research but still hang on to out of date ideas. The number of other problems caused by hypothyroidism which are treated as separate diseases are huge and are costing the NHS vast amounts of money which could be saved.

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My next test is on 15.12.17. Since the last test I have been back on 15 mcg ERFA with the levo. I don't expect it has made much difference at that dose and I certainly don't feel any better. If I increase the ERFA I will probably decrease the levo a bit.

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Guineapiggy,

Your private endo is talking rubbish about Erfa suppressing your own thyroid function. Your thyroid function has already failed if you have TSH 5.8 on 100mcg Levothyroxine.

You are very undermedicated to have TSH 5.8 with FT3 below range. I felt terribly unwell with fT3 below range. It is low FT3 which makes you feel hypothyroid and causing palpitations not FT4 which is mid-range so absolutely not too high.

You need enough Erfa to bring FT3 into the upper third of range ie >5.0. I would increase dose to 45mcg Erfa in addition to your current Levothyroxine dose. Unfortunately, having a blood test in 10 days isn't long enough to judge whether the dose increase has optimised your levels. If you can delay the blood test until 6-8 weeks after increasing dose that would be better.

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Thanks for your info.

Sorry the columns with the readings didn't appear the way I typed them. All the spaces disappeared. Glad you managed to work them out.

I have to have the blood test in 10 days as the NHS endo wants to do adrenal antibody and cortisol tests, so I may as well get the thyroid tests done as well to see what difference 15mg Erfa made. I see my other private doctor tomorrow and I will tell him about your advice and that I want to go back to using Erfa and levo. If I take 45 -60 mcg of Erfa I wondered whether I should reduce the levo to 75 mcg to allow for the T4 component in the Erfa. I also don't want to cause a reverse T3 problem if there is too much T4 around. If it isn't converting I can't see any point in raising it further.

Also, looking at geneticlifehacks.com/thyroi... and hy 23and Me results I have a higher risk of Hashimoto's and Graves' disease and the 3 genes for DIO1, DIO2 – Deiodinase genes for conversion of storage (T4) to active (T3) all have me in the "bad" group i.e. decrease ratio of fT3 to fT4, decreased free T3, decreased T4 to T3 conversion, so I need to bring this to my private doctor's attention again. I will try to mention it to the NHS endo if I ever see him again but I doubt he will even listen.

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Guineapiggy,

The site doesn't support formatting unfortunately.

I wouldn't worry about rT3 right now, you are undermedicated so rT3 is unlikely. It's more important to optimally dose. FT4 isn't high in range so I see no need to reduce Levothyroxine dose to add in 45mg Erfa.

If you have the DIO2 gene impairment which reduces conversion of T4 to T3 the T3 in Erfa will help overcome that. You need to take sufficient Erfa though. There is only 2mg T3 in 15mg Erfa.

You can have blood tests to determine whether or not you have Hashimoto's and Graves disease. I wouldn't bother with testing for Graves because you are hypothyroid. 90% of hypothyroidism is caused by Hashimoto's so you may not think it worth bothering to have that either.

The blood tests required are:

Thyroid Peroxidase antibody (TPOab) - Hashimoto's

Thyroglobulin antibody (TgAb) - Hashimoto's

Thyoid Stimulating Immunoglobulin (TSI) - Graves

Thyroid Receptor antibody (TRab) - Graves

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I asked for the TgAb but my NHS GP had never heard of it and the endo said it wasn't necessary as they did the TPO.

On 31.3.17 the TRab was 0.22 u/L [0.00 - 0.4 u/L

I've had 3 TPOab tests.

3.5.16 213 iu/mL [0.0 - 6.0]

6.4.17 165 iu/mL both done on NHS

On 7.3.17 I had a female hormone profile done by ZRT labs and their result was 147 iu/mL but they had a different range of 0 -150 iu/mL, saying 70 - 150 was borderline.

This is rather confusing as it seems to indicate rather low levels of autoimmunity, especially compared to the levels some people report, so I don't know what to make of them.

I've always felt the thyroid problems were secondary to the chronic stress I have suffered from most of my life but especially during my working years. Perhaps it is also related to other gut problems. I've had a negative result for SIBO [which is the first goo test result I have had!] and am awaiting the results of a gut permeability test, which I hope to get tomorrow.

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Guineapiggy,

TRab was negative for Graves. It's usually only tested when patients are hyperthyroid.

TPOab is positive for autoimmune thyroiditis (Hashimoto's) so there's no need to test TgAb which isn't usually checked in primary or secondary care except for thyCa patients. There's no need to repeat TPOab after a positive result.

If the 147 female hormone result was borderline you will need to repeat the test at some point to determine whether it is negative or positive.

Hashimoto's has caused your hypothyroidism. There is a school of thought that gut permeability triggers Hashimoto's but others think 'leaky gut' is a crock.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine/NDT treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

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Many thanks

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