Hi,
I was diagnosed with Hashimoto's last year. I have been on 75mg of Levothyroxine since. My TSH is now in range however I am still suffering with symptoms. Having done lots of research I now believe I am not converting T4 to T3.
Does anyone know a good endocrinologist in London, ideally one that is known to be open to prescribing desiccated thyroid.
Please message me if so.
Many thanks.
Paulo001,
If you post your TSH, FT4 and FT3 results and ranges we can tell you whether you are a good or poor converter and whether you are optimally dosed.
Email louise.roberts@thyroiduk.org for a list of member recommended endocrinologists. Contact their offices prior to booking an appointment as not all will prescribe NDT. NDT isn't usually prescribed on NHS.
Thanks, I have emailed Louise and she has sent me the list. Going through them now trying to decide who might be best!
With regards to my test results. I have never had my T3 tested. But here are my other results.
When I was diagnosed (Jul 16):
TSH 24.6 mu/L 0.3 - 4.2 mu/L
T4 11.1 pmol/L 12-22 pmol/L
6 weeks later
TSH 9.8 mu/L 0.3 - 4.2 mu/L
T4 17.3 pmol/L 12-22 pmol/L
TPO antibodies 207 iu/mL 0 - 34 iu/mL
8 weeks later
TSH 1.4 mu/L 0.3 - 4.2 mu/L
Since then my TSH has been between 1.1 and 1.7 each time I have been tested every 3 months.
Paulo001,
You need FT3 tested at the same time as TSH and FT4 to determine what your conversion is like. You can order private tests via thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.
TSH 1.1 would indicate adequate dosing but 1.7 could indicate scope for an increase in dose.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine 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_...
You can post a question asking for feedback on the endocrinologists you think may be worth seeing but please ask for feedback to be sent to you via private messages.
VitD will need supplementing during Oct-Apr to maintain levels. I would supplement 5,000iu daily for 6 weeks and then reduce to 5,000iu alternate days. Take vitD 4 hours away from Levothyroxine.
Ferritin could be a little higher. You could eat more iron rich food or supplement iron with 1,000mg vitamin C to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine.
Thanks for all of this. A lot to digest!
I will order some blood tests from Medicheck. Is testing for TSH, FT4, T4, FT3, TGAb, TPOAb or is rT3 also of value?
Interesting about the gluten. I have been strictly gluten free for 8 weeks and have noticed little difference. I am thinking of now reintroducing to see what change that has.
Paulo001,
G-f is recommended to reduce antibodies. It can take over a year for the villii in the gut to heal sufficiently to notice improvement in symptom and suppress antibodies.
Your TPO previously tested positive confirming Hashimoto's so there's no point in retesting unless you want to see whether antibodies have risen or fallen.
I don't think there's much value in testing rT3. If you decide to do so you will need to use a phlebotomist for a venous draw as rT3 is not available as a home test.
I think TSH, FT4 and FT3 is sufficient. Total T4 and total T3 are part of the packages but FT4 and FT3 are the important tests.
Plus have you had vitamin D, folate, ferritin and B12 tested
Always get actual results including ranges
Low vitamins likely with Hashimoto's
These have all come back normal....
Vit D 71 nmol/L 50 - 250 nmol/L
Folate 14.3 ug/l 3.9-26.8 ug/l
Ferritin 72 ug/l 30 - 400 ug/l
B12 575 ng/l 197 - 771 ng/l
A gluten free diet helped improve my symptoms from antibodies/Hashimotos. Most medics poo poo the suggestion!
It may be helpful to explain my symptoms a little. I have fewer physical symptoms, except I feel the cold easily and feel a bit sluggish (90% of normal). However, I have been suffering from poor concentration, poor memory, brain fog and some depression. This has been the same for almost a year.
It would be really helpful to see what your T3 level is, probably it's not optimal. T3 is what is used by every cell of the body especially the brain. If you haven't got a good level of T3 circulating in your blood then you will get brain fog etc. Also your B12 and Vit D could do to be higher in the range as Hashimotos usually means that your body cannot absorb nutrients properly. I am permanently supplementing B12 and Vit D with vit K in spite of being on a strict gluten free diet. TSH is a pituitary hormone. NHS is unable to see that it tells you nothing about how well you are absorbing T4 (levothyroxine) and how well you are converting it to T3. I am not the best "converter", and so I still get brain fog etc. I am looking to take some T3 which I bought privately to see if I get some improvement.
I've had my results back. Any help interpreting them would be great!
THYROID STIMULATING HORMONE 1.92 mIU/L 0.27 - 4.20
FREE THYROXINE 22.7 pmol/L 12.00 - 22.00
TOTAL THYROXINE (T4) 112.0 nmol/L 59.00 - 154.00
FREE T3 4.72 pmol/L 3.10 - 6.80
THYROGLOBULIN ANTIBODY 416.000 IU/mL 0.00 - 115.00
THYROID PEROXIDASE ANTIBODIES 104 IU/mL 0.00 - 34.00
Well unfortunately NHS will say you are not hypo with those results as everything is in range! However as you are on levo you should aim for a TSH of 1 or less so you need an increase in your levo to 100mcg and then retest after 6 weeks
However you do have raised antibodies so would suggest sticking with Gluten free 6 weeks is not long enough for long term gut improvements. It could take up to 6 months to reduce your antibodies. Also your Vit D needs to be nearer 100 and B12 nearer 1000 this will help absorption of levo that you are taking.
Again NHS would say you are fine! Seaside Susie on this site is very good with suggestions of what to take and how much. Usually antibodies mean we have leaky guts and therefore are poor absorbers of nutrients and levo. I would suggest that your T3 could be better but no doubt doc will be very unhappy to increase your levo because you are very slightly over range with T4.
I have just had a most unsatisfactory medication review with my GP who is only interested in my TSH result of 0.06!!! My T4 and T3 levels are not good but they are not interested! We shouldn't have to battle for good health!
Thanks the reply, as usual very helpful. I am seeing a private Endo in November so hopefully he will agree to increase my dose. Do my ratios suggest I am a poor converter or just that I am on too smaller dose.
I also notice that my TPO antibodies have gone from 207 when I was first diagnosed to 104 now. Would that suggest what I have been doing lifestyle wise is working or is that normal when you treat with T4?
Sorry to hear about your own issues. The top thing I have learnt from all this is how rigid GPs are so can relate to that.
paulo001
THYROID STIMULATING HORMONE 1.92 mIU/L 0.27 - 4.20
FREE THYROXINE 22.7 pmol/L 12.00 - 22.00
TOTAL THYROXINE (T4) 112.0 nmol/L 59.00 - 154.00
FREE T3 4.72 pmol/L 3.10 - 6.80
As you're currently taking 75mcg Levo, I'd normally say your TSH suggests that you need an increase. However, your FT4 is very slightly over range and taking more Levo to reduce TSH will push your FT4 further over range with the risk of then making rT3. With your FT3 at 4.72 it really is very low in range compared to your FT4 and suggests that adding some T3 would be a good idea. Adding some T3 will increase your FT3 and often, when taking T3, TSH lowers (and can become suppressed) and FT4 can sometimes lower too.
Saying that, getting T3 on the NHS is extremely difficult.
**
THYROGLOBULIN ANTIBODY 416.000 IU/mL 0.00 - 115.00
THYROID PEROXIDASE ANTIBODIES 104 IU/mL 0.00 - 34.00
Clutter mentioned further up that it can take a year for the gut to heal and it may be that your antibodies are lower this time due to their natural fluctuation rather than healing already taking place. To help reduce antibodies, besides being gluten free, supplementing with selenium l-selenomethionine 200mcg daily can also help, as can keeping TSH suppressed.
A couple of links I always pass on:
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
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Vit D 71 nmol/L 50 - 250 nmol/L
The Vit D Council recommend a level of 100-150nmol/L. There's room for improvement and my suggestion would be to look at taing 2000-3000iu daily for 3 months then retest. As you have Hashi's, I understand that a Vit D spray is absorbed better than softgels as it will bypass the stomach. SlowDragon recommends BetterYou so you could have a look at that.
When supplementing with D3, we need to retest once or twice a year to keep within the recommended range, you can do this with a private fingerprick blood spot test with City Assays for £28 if you're not doing other tests with Medichecks or Blue Horizon at the time vitamindtest.org.uk/
There are important cofactors needed when taking D3
vitamindcouncil.org/about-v...
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
naturalnews.com/046401_magn...
Check out the other cofactors too.
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Folate 14.3 ug/l 3.9-26.8 ug/l B12 575 ng/l 197 - 771 ng/l
Folate is very close to the recommended level, which is at least half way through it's range, so that's pretty good. B12 isn't too bad although an extract from the book, "Could it be B12?" by Sally M. Pacholok states:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Personally, I would nudge it up a bit and get it to the very top of the range at least, and to self supplement you will need sublingual methylcobalamin lozenges 1000mcg daily, along with a good quality B Complex to balance all the B vitamins.
Steer clear of own brand H&B, Boots and supermarkets, best quality comes from the internet and I personally like Thorne Basic B.
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Ferritin 72 ug/l 30 - 400 ug/l
For thyroid hormone to work ferritin needs to be at least 70, so you have achieved that, but it's recommended to be through range so you could either take an iron supplement (such a faff to fit in around Levo and other supplements as you need to take them 4 hours away from Levo and 2 hours away from other supplements, along with1 000mg Vit C each time to aid absorption and help prevent constipation) or ou can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in... I raised mine from 35 to 91 just by eating liver every week.
Hi Susie, Many thanks for the information. It's really appreciated.
A lot to take in! I have an appointment with a private Endo next month so I'm hoping he will prescribe a combination. I am concerned about what the article says about the antiboides and leading to other AI diseases in older age. So very keen to improve sooner rather than later!
I have read your advice on what supplements to take and have summarised below, would you mind just checking that all the disoing is okay and I haven't missed anything.
selenium l-selenomethionine 200mcg (anytime)
Vit D spray 3000iu (daily for three months then retest)
K2 100mcg as Natural MK-7 taken vit D spray.
Magnesium Citrate 100mg daily in the evening.
methylcobalamin lozenges 1000mcg (anytime)
Thorne Basic B (anytime)
Eat iron rich food especially liver.
Sounds like a plan paulo001
Timing of supplements generally -
B vitamins - no later than lunchtime as they can be stimulating and you don't want sleep disturbed, check packs, probably need to take B Complex with food.
Vit D/K2 with dietary fat. Some people find that taking Vit D in the evening can disturb sleep.
Minerals generally advised to take in the evening, so you might want to take your selenium with evening meal.
Magnesium Citrate - depending on whether tablets or powder, check pack to see if you need to take with food if a tablet. I use Mag Citrate powder and mix with orange juice and take a couple of hours before bed. Normal dose of magnesium is around 400mg so you could start low and build up. Mag Citrate can have a laxative effect so watch for that.
Enjoy your liver, I've just bought some to have tomorrow 
(forgot the onions though, will buy those tomorrow)
Many thanks again Susie. I have ordered everything so fingers crossed.
I will report back, hopefully with good news.
Enjoy your liver!
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