Data suggest symptoms of hypothyroidism persist... - Thyroid UK

Thyroid UK

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Data suggest symptoms of hypothyroidism persist in 5–10% of patients on T4. If you did/do not do well on T4 only, do you have Hashimoto's?

lynmynott profile imagelynmynottPartnerThyroid UK391 Voters
162
Yes
155
Don't know
74
No
73 Replies
sweetenuff1945 profile image
sweetenuff1945

i have been thriving since taking Armour Thyroid.

ReallyFedUp profile image
ReallyFedUp in reply to sweetenuff1945

Me too. I have trialed T3 too and did badly.

Natalie_Edinburgh profile image
Natalie_Edinburgh in reply to ReallyFedUp

what dose did you try. I found 20ug T3 to be good but 20ug was too much.

ReallyFedUp profile image
ReallyFedUp in reply to Natalie_Edinburgh

I was on 3 x 20 T3 after a combo of 100Levo and 2 x 20 T3. I now have a script for 3grains of Armour but to function I take 5grains.

Natalie_Edinburgh profile image
Natalie_Edinburgh in reply to ReallyFedUp

I just read what I wrote above and it was meant to say 10ug was good and 20ug too much. Why did you start on such a high dose of T3 instead of trying a low dose first then increasing if needed? I assume you tried T4 only before too. I find a lot of people on this website start on high dose T3 and then wonder why they still don't feel good. Surely the best starting point is to recreate the natural situation ie 5-10ug T3 with enough T4 to maintain the TSH around 0.5-1. And if that doesn't work then try other combinations.

ReallyFedUp profile image
ReallyFedUp in reply to Natalie_Edinburgh

I took what i was prescribed by my Consultant- I have no thyroid due to cancer. Prior to being precribed the T3/T4 combo, I had been on 250mgs Levo to get readings within range but I put on 5stone in weight, anti-depressants did not alleviate sucidal thoughts, sleeping 14+hours daily. Combinations were tried. What suits one person doens't always suit another.

AlasdairM profile image
AlasdairM in reply to ReallyFedUp

Yep - Dr tells you you're depressed, rather than actually metabolism depressed (ablity to burn calories compromised), when you are fighting to function properly and may have periods during day when you feel senile - depressing if you are in 40s.

In UK T3 only NHS-supplied as 20mcg tablets. But if on combo treatment, many will over-react to such a kick first thing in morning. I have to split 20mcg tablet in half to spread the dosage and even-out the effect, by taking second half early afternoon.

Soldieress profile image
Soldieress

I'm on T4 Levothyroxine 50mg. My TSH, FT4 and FT3 results look quite good now but I don't feel significantly worse or better

Clarebear profile image
Clarebear

I too am much better on Armour but my antibodies were negative, so I don't think I have Hashimotos

Redditch profile image
Redditch

I don't know where 5-10% came from.. I think you'd be safer changing this to "some" because for those of us fighting really hard to get t3 and NDT onto the NHS training agenda and guidelines, this looks like we're fighting for a tiny minority and.. we're not... nobody really knows but there is lots of research that points us more in the region of 40%.. see here..

Studies using Armour Thyroid/Natural Thyroid Extract-v-levothyroxine-only Therapy.

Studies using 'Armour Thyroid' per se in three of 12 studies.

1. Krenning, E.P., Docter, R., Visser, T.J., et al.: Replacement therapy with L-thyroxine: serum thyroid hormone and thyrotropin levels in hypothyroid patients changing from desiccated thyroid to pure thyroxine substitution therapy. Neth. J. Med., 28(1):1-5, 1981.

2. Singh, S.P., Feldman, E.B., and Carter, A.C.: Desiccated thyroid and levothyroxine in hypothyroidism: comparison in replacement therapy. N.Y. State J. Med., 72(9):1045-1048, 1972.

3. Sawin, C.T., Hershman, J.M., Fernandez-Garcia, R., et al.: A comparison of thyroxine and desiccated thyroid in patients with primary hypothyroidism. Metabolism, 27(10):1518-1525, 1978.

Nine further studies reporting “direct comparison” of the two forms of treatment i.e. natural -v- synthetic thyroxine only.

4. LeBoff, M.S., Kaplan, M.M., Silva, J.E., et al.: Bioavailability of thyroid hormones from oral replacement preparations. Metabolism, 31(9):900-905, 1982.

5. Lavietes, P.H.. and Epstein, F.H.: Thyroid therapy of myxedema: A comparison of various agents with a note on the composition of thyroid secretion in man. Ann. Intern. Med., 60:79-87, 1964.

6. Gorowski, T., Pucilowska, J., and Wernic, K.: Comparative effects of desiccated thyroid gland and sodium salt of L-thyroxine in the treatment of hypothyroidism.Pol. Tyg. Lek., 44(32-33):768-770, 1989.

7. Felt, V. and Nedvidkova, J.: Comparison of treatment with L-thyroxine and a dried thyroidgland preparation in patients with hypothyroidism. Vnitr. Lek., 28 (11):1067-1073, 1982

8. Wartofsky, L.: Combined levotriiodothyronine and levothyroxine therapy for hypothyroidism: are we a step closer to the magic formula? Thyroid, 14(4):247- 248, 2004

9. Kosowicz, J., Horst-Sikorska, W., Lacka, K., et al.: Outcome of treating hypothyroidism with thyreoideum. Pol. Tyg. Lek, 48(27-28):599-602, 1993.

10. Warszawie, C.M.K.P.: Treatment of hypothyroidism with L-thyroxine. Pol. Tyg. Lek, 48(27-28):605-608, 1993.

11. McGavack, T.H. and Reckendorf, H.K.: Therapeutic activity of desiccated thyroid substance, sodium Lthyroxine and D, L-triiodothyronine: a comparative study. Am. J. Med., 20:774-777, 1956

12. Baisier, W.V., Hertoghe, J., and Eeckhaut, W.:Thyroidinsufficiency: is thyroxine the only valuable Drug? J. Nutr. Environ. Med., 11:159-166, 2001.

Studies that Established the Clinical Benefits of NDT

13. Gautam Das, Shweta Anand & Parijat De. Does synthetic thyroid extract work for everybody? Endocrine Abstracts (2007) P316 (abstract below)

14. Alan R. Gaby, MD. “Sub-laboratory” Hypothyroidism and the Empirical use of Armour® Thyroid. (Altern Med Rev 2004;9(2):157-179)

15. Lowe, J.C.: Natural desiccated thyroid: Guttler’s false claim about It. Thyroid Science 4(9):C1-6, 2009

16. Novak, Edmund A. M.D.; Holthaus, Joseph M. M.D.; Ogborn, Richard O. M.D: Clinical Study of Levo-Thyroxine and Aged Desiccated Thyroid in Euthyroid Subjects: American Journal of the Medical Sciences: March 1964

17. Thompson, W.O., McLellan, L.L., Thompson, P.K., et al.: The rates of utilization of thyroxine and of desiccated thyroid in man: the relation between the iodine in desiccated thyroid and thyroxine. Arch. Intern. Med., 1932.

18. Boothby, W. M., Sandiford, I., Sandiford, K., et al.: Abstract of Communication to the XIIth International Physiol. Congress held at Stockholm, Aug. 3-6, 1926. Skandinav. Archiv. 1926, xlix, 99. Metabolism studies showing the effect of desiccated thyroid and thyroxin on a patient with myxedema.

19. Thompson, W.O., Nadler, S.B., Taylor, S. G., III, and Thompson, P. K.: The calorigenic action of various thyroid derivatives. J. Clin. Invest. (Proc.), 13:690, 1934.

20. Foster, G. L., Palmer, W. W., and Leland, J. P.: A comparison of the calorigenic potencies of l-thyroxine, dl-thyroxine, and thyroid gland, with a note on the thyroxine content of the acid-soluble fraction of the peptic digest of thyroid protein. J. Biol. Chem., 115:467, 1936

21. Thompson, W. O., Thompson, P. K., Brailey, A. G., et al.: The calorigenetic action of thyroxin at different levels of basal metabolism in myxedema. J. Clin. Invest., 7(3): 437–463, 1929.

22. Sturnick, M.I. and Falcon-Lesses, M.: A comparison of the effect of desiccated thyroid and sodium levothyroxine on the serum protein-bound iodine. New Engl. J. Med., 264:609, 1961.

23. Sisson, J.C.: Principles of, and pitfalls in, thyroid function tests. J. Nuclear Med., 6:853-901, 1965.

24. Robertson, J.D. and Kirkpatrick, H.F.W.: Changes in basal metabolism, serum protein-bound iodine and cholesterol during treatment of hypothyroidism with oral thyroid and l-thyroxine sodium. Brit. Med. J., March 22, 1:624, 1952.

25. Gilman, A.G. and Murad, F.: Thyroid and antithyroid drugs. In The Pharmacologic Basis of Therapeutics, (ed 5). Edited by L.S. Goodman and a. Gilman, New York, MacMilIan, 1975, p.1398.

26. Means, J.H., DeGroot, L.J., and Stanbury, J.B.: The Thyroid and Its Diseases, 3rd edition. New York, McGraw-Hill, 1963, p. 334.

27. Werner, S.C.: Treatment of hypothyroidism. In The Thyroid, 3rd edition. Edited by S.C. Werner and S.H. Ingbar, New York, Harper and Row, 1971, p.834.

28. Daughaday, W.H.: The adenohypophysis. In Textbook of Endocrinology, 5th edition. Edited by R.H. Williams, Philadelphia, Saunders, 1974, p.60.

29. Lowe, J.C.: Stability, effectiveness, and safety of desiccated thyroid vs levothyroxine: rebuttal to the British Thyroid Association. Thyroid Science, 4(3):C-1-12, 2009.

30. Frederick L. Benoit.ieutenant Commander, MC, MC, USN: Treatment of Riedel's Thyroiditis With Desiccated Thyroid.Endocrine Clinic and Medical Service, U.S. Naval Hospital,Oakland..Submitted July 14, 1964.

31. Beverley Strisower, A.B.,John W Gofman, MD., Elmer Galioni, MD.,Joshua H Rubinger, M.D.,Georgfe W O’Brien M.D. and Alexander Simon, M.D. “Effect of Long-Term Administration of Desiccated Thyroid on Serum Lipoprotein and Cholesterol Levels”.The Journal of Clinical Endocrinology & Metabolism January 1, 1955 vol. 15 no. 1 73-80

32. George S. Serif and Alan K Brevik.: " Effects of Butyl-4-hydroxy-3,5-diiodobenzoate on the Conversion of p-carotene to Vitamin A in the Rat." The Journal of Biological Chemistry. Vol. 235, No. 8, August 1960

Therapeutic Equivalence of NDT, T4, and T3

35. McGavack, T. R. and Reckendorf, H. K.: Therapeutic activity of desiccated thyroid substance, sodium Ithyroxine and d,1 triiodothyronine: A comparative study. Amer. J. Med., 20: 774, 1956.

36. Singh, S.P., Feldman, E.B., and Carter, A.C.: Desiccated thyroid and levothyroxine in hypothyroidism: comparison in replacement therapy. N.Y. State J. Med., 72(9):1045-1048, 1972.

37. Lavietes, P.H. and Epstein, F.H.: Thyroid therapy of myxedema: A comparison of various agents with a note on the composition of thyroid secretion in man. Ann. Intern. Med., 60:79-87, 1964.

38. Haynes, R.C., Jr.: Thyroid and antithyroid drugs. In Goodman and Gilman’s The Pharmacological Basis of Therapeutics, 8th edition. New York, Pergamon

PinkNinja profile image
PinkNinja in reply to Redditch

I think the number may be higher too, but bear in mind that some people who aren't doing well on T4 only are not on a high enough dose because of mis-educated doctors trying to keep people nicely in the middle of the reference ranges. But this is a whole other battle!

RedApple profile image
RedAppleAdministrator in reply to Redditch

I don't know where the 5-10% comes from either. But if there isn't a specific figure that can accurately be quoted, then maybe it simply needs to be prefixed with

"It has been suggested that..."

SilkyJ profile image
SilkyJ in reply to RedApple

It's actually between 30% and 50%. You can find the source here: tpauk.com/articles/3425-slo...

"The Inventors/Applicants are Professor Richard Ross and Dr. Hiep Huatan . In their International Application published under The Patient Coorperation Treaty they wrote:

"The Inventors/Applicants are Professor Richard Ross and Dr. Hiep Huatan . In their International Application published under The Patient Coorperation Treaty they wrote:

"Individuals who suffer from hypothyroidism are typically prescribed Thyroxine (T4) as replacement therapy. It is well recognised that a large proportion of patients persist with specific symptoms and a failure to regain a normal sense of well-being despite thyroxine replacement. For example, recent studies (show that) it is estimated that between 30% and 50% of patients reported dissatisfaction with their treatment".......... and

"It is apparent that current recent regimes for hypothyroidism do not adequately control the condition and alternative improved treatments are needed that do not have the side effects associated with T4 treatment."

RedApple profile image
RedAppleAdministrator in reply to SilkyJ

As far as I can see from the link and quote you've given, 30%-50% is still only an estimation, not an actual figure. Granted it's a much higher figure than is mentioned in the poll title. The outcome of the poll is not going to be affected by this figure anyway.

SilkyJ profile image
SilkyJ in reply to RedApple

That's true. I notice that many have answered that they don't know, which would mean that whatever the poll % is, it still won't be accurate. I also believe that some may not have understood the question so may not have answered correctly. It took me some time to figure it out but then I'm not well at the moment, like many others on here.

RedApple profile image
RedAppleAdministrator in reply to SilkyJ

I agree, it should have been worded more carefully.

PinkNinja profile image
PinkNinja

My doctor won't check my antibodies so I don't know. Of all the people who don't know, you could estimate how many of them might have Hashimoto's by the relative incidence compared to other forms of hypothyroidism. That would be most of them :)

tegz profile image
tegz in reply to PinkNinja

Considering the money wasted on endless repeat blood tests and FBCs -TPO and TG Antibodies check would be a cost effective filter on obvious Hashi cases building. I had them done privately [Clear]- and not a huge cost.

Reverse T3 is more costly- but would also be invaluable for those under treatment and struggling, particularly..

Redditch profile image
Redditch

All true and some couldn't be getting on with it because of vitamin deficiencies or adrenal issues interfering... I still think it's more like 40% though.. there is nobody AT ALL. EVER that I've seen who says they felt better on Levo than on NDT.. so .....

lynmynott profile image
lynmynottPartnerThyroid UK in reply to Redditch

I have met a lot of people who feel great on levo and are adamant about that! More research needs to be done to find out why some people do feel well on it.

Glynisrose profile image
Glynisrose in reply to lynmynott

Yes but is this because they believe their doctors when they say ' It's your age' or other such wrongly attached phrases or because they genuinly have no symptoms? To be honest I have come across many people who rave how amazing levo is and then in the next breath go on to say how they are suffering from symptoms!!!

lynmynott profile image
lynmynottPartnerThyroid UK in reply to Glynisrose

Years ago, I used to think that everyone on T4 would be better with T3 but I have slowly changed my mind. When I discuss this topic with people I make sure that I ask them exactly what symptoms they have and make suggestions of possible symptoms they may have but they tell me they are in very good health. Thyroid UK want to know about people who feel good on T4 as well as those who don't. We really need to find out why some people are better on particular meds and I hope that "personalised medicine" will be a thing of the future for thyroid disease.

Fruitandnutcase profile image
Fruitandnutcase in reply to lynmynott

I have an American friend who was telling me she started out on desiccated thyroid and eventually ended up on synthetic thyroxine because it was what suited her best. I agree 'personalised medicine' is what we need. When I first started teaching there was a mantra 'every child is an individual' well every adult should be an individual too :-)

Thyroidmeg profile image
Thyroidmeg in reply to Glynisrose

I agree when I say I'm tired nurse says its because you're overweight your tsh is fine. She wouldn't test anything else and said she can guarantee I'm converting. So maybe some people just say oh ok doc must be right

W3ndy2159 profile image
W3ndy2159 in reply to lynmynott

Maybe the reason people don't do well on T4(Levo) is because they don't convert properly! Perhaps thro Vitamin/mineral deficiencies or gluten/wheat intolerance/coeliacs etc?

I do have hashimoto's and not well on T4 only. Just started on T3/T4 combo this week. Too early to tell if any improvement! :-/

Hashi73 profile image
Hashi73 in reply to W3ndy2159

Wendy, who agreed to let you try t3/4 combo, was it your gp or endo? How did you get them to? Was your t4 mid range and t3 low, ie did your results indicate conversion issues. Interested as I will be revisiting my endo in sept and want to know the right things to say to persuade him to let me try an alternative to Levo! Thanks Sue

W3ndy2159 profile image
W3ndy2159 in reply to Hashi73

Hi hashi73??

My endo prescribed T3 to go with my Levo (T4). I took in loads of information and my research. I asked for a trial of T3/4. I felt i was an ideal candidate for a trial. My reasons being.... I have been diagnosed for 12 years and never felt well on Levo. I have done loads of research. I have hashi's and read hashi sufferers do better on T3. My mum and 2 of my 3 sisters have other AI diseases. I am gluten/wheat intolerant so feel I don't convert T4 to T3 very well. I also have low iron, low vitD3, low vit B12. I take very high doses of various vitamin and mineral supplements. I have started a 100% gluten wheat free life style. Although I am feeling better I am nowhere near feeling completely well. I said "I am trying to do everything I can think of, to help myself obtain optimal health and was hoping you will prescribe T3 on a trial basis, to see if it makes a difference? Please please please help me get better ??thank you

Good luck with your endo visit....wendy

RedApple profile image
RedAppleAdministrator in reply to Redditch

Redditch, it's worth bearing in mind that people who already feel fine on levo don't usually have any reason to try desiccated or other thyroid medications. There are plenty of people who have been, or are still, active on this forum that feel good on levo. There are also some who have tried NDT and do not get on with it.

What I feel we patients are asking for is 'choice' of thyroid medication. So that *if / when* we tell our doctor that we're not feeling well and would like to try something else, we don't have to fight a battle (that we often won't win) to get the opportunity to even try desiccated or T3.

shaws profile image
shawsAdministrator in reply to RedApple

Oh - how I agree with you RedApple

Fruitandnutcase profile image
Fruitandnutcase in reply to RedApple

So right RedApple - have just commented about that above :-)

Jane104 profile image
Jane104

I definitely don't have antibodies. Early days but so far feeling much better on Nature Throid.

vanessa2 profile image
vanessa2

I am also fantastic on Armour, only one problem I have to pay for it.

helvon profile image
helvon in reply to vanessa2

do you buy it privatley and where. the reason im asking is that im prepared to tell the doc that if he gives me a prescription im prepared to pay for it

Totoro profile image
Totoro

I don't have Hashi's but am hypo. T4 improved my symptoms but not nearly enough. T3 works much better for me and I'm T3 only now.

Totoro x

tegz profile image
tegz

T4 therapy seems to have swept the board for too long. Money talks!

It may help in some, or even many, cases [who knows the figures?] -but by neglecting alternatives a lot of misery has been foisted on an un-suspecting public by a lot of unconcerned medics.

Hopefully, things are changing fast!

nightingale-56 profile image
nightingale-56

Was greatly improved on Levo from 1997 until 2007 when Antibiotics caused dreadful problems. Much better when Nutri Adrenal was added and Vit D3 and B12. Although blood levels are fairly good I do not feel completely good in myself yet and would dearly love to try T3 or NDT. But with Mid Essex CCG this is a definite NO. Janet.

OUTOFSYNC profile image
OUTOFSYNC

Who came up with the figure 5% to 10 %??

I would guess it's FAR higher than this - and this is simply more medical / media propaganda. Allow that some of us are not happy (or well) but make it look like the majority of treated patients are!

kosmickaz profile image
kosmickaz

Absolutely rubbish on T4 / T3 combo.

Only started to get better (after 5 years of illness) last year when I started on LDN and switched to t3 only around the same time (I refused to take anymore t4).

My body is still very weak though, due to the 5 years de-conditioning, I feel the deconditioning is my main problem now.

Laine profile image
Laine

Was on T4, now on T4/t3 + HRT. Still only have half a life, but at least now I am more hopefull that I may one day get my life back.

L

lizzyd profile image
lizzyd

I've had persistent hypo symptoms on T4 only for past 11 years, following sub-total thyroidectomy due to Graves' disease. Started T4/T3 combo this week... (fingers crossed)

Hashi73 profile image
Hashi73

Should this question be split into two?1. Do you take t4 only and do you feel that you do not do well with a t4 only med? 2. Do you have hashimoto's? It could go further to ask about other thyroid related conditions?

PinkNinja profile image
PinkNinja in reply to Hashi73

I think it would have to be separate polls.

Jane104 profile image
Jane104 in reply to PinkNinja

Could have had a slightly different questions with 6 options :)

Jane104 profile image
Jane104

I think if you are ok on T4 the question doesn't apply to you. It's asking how many of those who don't do well have hashi's. Would be interesting to see how many of those with and without hashi's do do well on T4 too but membership is undoubtedly biased to those who aren't doing well for whatever reason, and are here looking for answers.

amethyst22 profile image
amethyst22

I was on as high as 300mcg of Levo only and still felt like I was dying a slow death. Nature-Throid to the rescue, I feel (almost!) normal now on 2.5 grains. I have Hashis.

ffran profile image
ffran in reply to amethyst22

I understand when you say dying a slow death! i have taken levo for 15 years now and finally found out how to buy armour. Cannot get it off GP .

Very early days but already the horrible pain behind my eyes has lifted.

Stourie profile image
Stourie

My endo told me that I had really high antibodies when I was diagnosed nearly seven years ago but said I didn't have hashi's

Jo xx

SharonH profile image
SharonH in reply to Stourie

I too have high antibody levels but have never been told that I have Hashi's. May be I have got it and that is why I am no better on T4

Shaz

PinkNinja profile image
PinkNinja in reply to SharonH

If you have high antibodies, you almost certainly have Hashi's

Stourie profile image
Stourie in reply to PinkNinja

Why did my endo say that I definitely did not.Cause I asked him, twice. I don't understand.

Jo xx

PinkNinja profile image
PinkNinja in reply to Stourie

Ok. Maybe I am wrong then :) It does depend on which antibodies...

Some antibodies are present purely because the thyroid is being destroyed.

PinkNinja profile image
PinkNinja in reply to Stourie

You possibly have Hashi's, depending on which antibodies are high.

marram profile image
marram

I had a Sub-total thyroidectomy for Graves' at age 18 and a TT for nodules 18 years later at 36. I am sure that TT patients do better with T4/T3 or NDT.

Natalie_Edinburgh profile image
Natalie_Edinburgh

I didn't do well on T4 only and did better once switching to T4/T3 combo. But when I got a copy of my medical notes I discovered that when I was on T4 only my TSH was never optimum so the improvement could simply have been due to optimising my TSH. I have stopped taking T3 as an experiment to see if my health worsens again when back on T4 only.

sarahstevenson profile image
sarahstevenson

Like SharonH I think I have Hashi's no one medical has said so but TPO has risen from about 678 ish in 2009 to about 1000 in 2011.

Was very ill on T4 : they started me on 100mg due to the antibodies TSH about 6.4 then reduced it down a year later until with Dr BDP suggested I could stop it altogether and resulting in great relief from some awful symptoms ! NT and NAX didn't get me right as I kept seeming to plateau at my top tolerance level - now on T3 only 30mcg single dose early am NAX and NA with breakfast with a little NT adding in mid afternoon. Endo has me on Ferous Gluconate; Vit D and Vit C and Physio has me on B12. I seem to be getting to a better place. Adrenals always a factor - kidney removed in 1995.

Am rubbish today - LOW MOOD - exhausted and mouth ulcers rampant AGAIN; probably as I have stopped NAX and NA and NT in anticipation of blood tests next week - don't know if I can hold out until next Monday and cope with work - we'll see - might have to take some NA or even NT to get through without time off.

PinkNinja profile image
PinkNinja in reply to sarahstevenson

Sounds like you have Hashi's too. My doctor won't even test my antibodies.

Equi-crazy profile image
Equi-crazy

I have positive antibodies, so confimred Hashimotos. Did awful on T4 and now on t4 and t3. Dying to get NDT. Also think that T4 can worsen some symptoms.

delabutte profile image
delabutte

I recently asked my current GP about an antibodies test. As I have been on Levo for four years she said it could not be done. She looked back to the paperwork from the previous surgery and said that no antibodies test had been done. Hence my not knowing.

I felt rotten on Levo only, not to mention stacking on weight, and finally decided to self medicate, with a small addition of T3 and reducing the Levo, having been refused a trial prescription by GP and two Endos. (Problems all in my mind, etc.) Feel much better, although still not as good as I would like, and have lost some weight. GP is thrilled I have lost weigh, as I have metabolic syndrome, but not happy I have sourced my own T3.

B.

Pink_Bear profile image
Pink_Bear

I have hashi's, diagnosed 2 years ago, and so far do fine with levo - since I also started vitamin D supplements and gave up gluten I feel like I am my proper old self again.

tegz profile image
tegz

I thought the figure for not well under T4 treatment was about 50%.

Whether it's 5 or 50 still means a lot of people are suffering needlessly, mostly.

The TPO antibodies are the ones concerned with T4 usage, I think - and the Thyroglobulin to do with tumour issues. Mine a re both low- so I'm still hoping T4 may just work alone.

Amazing that these antibody tests are not automatically done by GPs.

The 'follow on' illnesses are so common that the end cost is much more.

Someone must be getting rich on all this pain!

teisibell profile image
teisibell

Hi

I am totally confused! Have just read all this and have been on levo for 15 months. Finding it difficult to get the dose exactly but have certainly improved on the meds (have other issues at present) But if you don't have Hashimotos and are hypo what do you have......nodules on goitre, thyroid cancer? They are the only othe things I have heard of which might cause that. Never heard of having antibodies tested I think it was just assumed that I had Hashimotos and was put on Levo. Should I be asking for other tests?

Tina.

Jane104 profile image
Jane104 in reply to teisibell

Have a look here on the main site for different causes and info on Hashi's: thyroiduk.org.uk/tuk/about_...

teisibell profile image
teisibell in reply to Jane104

Thank you Janericat that was most hepful!

Gillybean129 profile image
Gillybean129

GP never mentioned Hashis though my antibodies were 319 and TSH fluctuates, I would love to try T3 or better still NDT but feel GP would be unsupportive. Why oh why can't we have a choice, with other illnesses at least there are options here it's Levo or self fund which is wrong when I pay lots of NI like most people so annoyed....

ritz profile image
ritz

i have never been tested for h, but i could not take levo because it made my bp go mad, tried t3 but eventually that gave me af so now i can only take armour.........fortunately that works reasonably well except that the hospital keep doing blood tests and say i am taking too much and ask me to reduce which provokes symptoms.........so then they let me take more......then they do a blood test and say too much so we keep going round in circles. so not getting better just dizzy!

vajra profile image
vajra

Hi Lynn. My experience too suggests (informally) that while there are people that do well on it that there are likely far more than 10% experience problems on T4.

Or at least a very high percentage that don't either get diagnosed as having thyroid, auto immune or other metabolic issues that produce thyroid like chronic fatigue.

There are issues that may tilt the numbers in both directions.

It's in my experience potentially very hard to get tested for antibodies. Even if one does my own experience again suggests that the thyroid antibody tests don't reliably detect thyroid auto immune disease.

So there may be many that don't get diagnosed.

There's many hypothyroid and in this camp that don't even get diagnosed as hypothyroid as a result of use of the stock T4 only/TSH test and stock blood value ranges.

All of these categories of people will be reported as 'normal - they are not going to be in the frame at all.

Cutting back in the other direction there issues that mean that a person will experience hypo or hypo like symptoms no matter what is done to fine tune the thyroid replacement regime - stuff like high and low levels of cortisol (chronic stress/consequent adrenal exhaustion), various toxicities (e.g. mercury), vitamin and mineral deficiences, other endocrine/hormonal issues, immune disturbances etc.

T3 may help some of these, but many will likely feel they have problems using T4.

Most of this latter group unless handled by a very expert holistic practitioner will experience hypo or hypo-like symptoms, but will again be reported as being 'euthyroid'. (having normal blood hormone levels)

I guess the problems in all of this relate to the tendency of the various parties to misuse and misunderstand statistics, and the blurring of the boundaries between categories of thyroid and other metabolic issues - the enormous deficiences in the handling of metabolic and fatigue related illness by the mainstream profession.

It could be that the percentage with genuine T4 conversion problems is actually quite low (maybe the 10% mentioned) - that the remainder (potentially up to 30% more?) have other issues caused by modern lifestyle and other problems that mean that are still effectively hypo or metabolically deficient, but not because of T4.

Or it could be that the % that genuinely can't use T4 is much higher than 10%.

The core issue as it emerges in practice is perhaps the tendency of the profession to run the stock T4 and TSH tests and ignore/effectively refuse to treat symptoms after that.

ian

jaxnbreeze profile image
jaxnbreeze

Hi Lyn - Not sure which box to tick as I, thankfully, do well on T4 and no I don't have Hashimotos. Regards, Jax

At the time I was on thyroxine I was not given a diagnosis of Hashi's, just an underactive thyroid. However I went to my GP again yesterday and he has now confirmed it officially. I knew I always had Hashi's as the antibodies were raised but I wanted to hear it come out of the doctor's mouth.

How many people have hypothyroid and don't know they have Hashimoto's?

I had never heard of it until I joined Thyroid Uk. When I went to the Dr again I asked 'do I have Hashimoto's Disease?'......no answer! I asked again. He looked at me an nodded, saying 'but it makes no difference whatsoever'

How many more people aren't aware of this?

I have to ask over and over to get copies of results, why?

Everything is such a fight :(

tegz profile image
tegz in reply to

It may make no difference 'Now',Storm- but it may have made a difference 'Then'!

Harder to recover from, now -and that's maybe why the 'instutional stare' [you know] pops up?

in reply to tegz

Thanks Tegz I know what you mean.

It's nearly a year since diagnosis, yet I still feel a complete newbie, there is so much to learn!

What sort of difference could it have made?

tegz profile image
tegz in reply to

Dr's seem to mostly have two frames, Hashis or Graves.

This due to the benchmark approach to blood hormone levels -when the amount in tissue affects us more, and what most [sufferers] go by.

With Hashis you will have a much higher TSH to flag up- but the damage will be well in process.

I'm not sure how the autoimmune side is handled [if at all, routinely]but it is a large dimension -as opposed to run down thyroids or stressed adrenals etc.

The TPO antibody level is a check on this but doesn't seem to be done readily by GPs.

I went private and was OK- though this isn't an 'all clear', good enough for me right now..

[See comments higher up this thread-many variations on the theme]

If 'subclinical' - how can they diagnose what they don't believe in -till too late?

Essentially to square your question- if it's not Hashis then more chance of correcting 'under performance' with nutritional support and if it IS Hashis then it's the long haul -& best caught earlier.

[Can anyone comment about immune system support/suppression in Hashis?]

in reply to tegz

Thank you Tegz.