Looking for help or advice

[Havana2426]

How long until I should feel better on 75mcg levothyroxine. Been taking this dose for 2 months after endo took away my T3 saying he does not support it. Feeling awful with irregular and painful and clotty periods, hard stool, difficulty swallowing, tiredness, broken sleep, pains in wrists and knees, puffy eyes and dark rings under eyes. Diagnosed 2012. Thank you

AUG 2017 (150mcg levothyroxine)

TSH 0.03 (0.27 - 4.20)

FREE T4 21.1 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

JUN 2017 (200mcg levothyroxine/10mcg T3)

TSH <0.02 (0.2 - 4.2)

FREE T4 29.8 (12 - 22)

FREE T3 10.2 (3.1 - 6.8)

FEB 2017 (175mcg levothyroxine/10mcg T3)

TSH 1.70 (0.2 - 4.2)

FREE T4 16.1 (12 - 22)

FREE T3 4.6 (3.1 - 6.8)

NOV 2016 (175mcg levothyroxine/10mcg T3)

TSH 3.89 (0.2 - 4.2)

FREE T4 17.2 (12 - 22)

FREE T3 5.0 (3.1 - 6.8)

MAY 2016 (150mcg levothyroxine/10mcg T3)

TSH 3.60 (0.2 - 4.2)

FREE T4 13.3 (12 - 22)

FREE T3 4.4 (3.1 - 6.8)

FEB 2016 (125mcg levothyroxine/10mcg T3)

TSH 7.80 (0.2 - 4.2)

FREE T4 12.9 (12 - 22)

FREE T3 4.1 (3.1 - 6.8)

DEC 2015 (75mcg levothyroxine/10mcg T3)

TSH <0.02 (0.2 - 4.2)

FREE T4 20.3 (12 - 22)

FREE T3 5.2 (3.1 - 6.8)

NOV 2015 (75mcg levothyroxine/10mcg T3)

TSH <0.02 (0.2 - 4.2)

FREE T4 20.6 (12 - 22)

FREE T3 5.6 (3.1 - 6.8)

AUG 2015 (175mcg levothyroxine)

TSH 1.20 (0.2 - 4.2)

FREE T4 19.3 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

[Nanaedake]

I'm so very sorry you've been caught up in the 'T3 robbing Endo epidemic' brought on by NHS cost saving policies. It's very distressing to read many accounts on here of people who've had their T3 withdrawn and are left with horrible symptoms and no help at all.

I've no idea how long you will feel unwell or whether you will ever feel better. I don't take T3 myself but optimising all my vitamin levels and taking supplements has helped. I've had to ask my GP to test vitamin levels as its not something the NHS generally thinks about doing for thyroid patients. Levothyroxine doesnt' work well unless vitamin D, folate, ferritin and B12 are all optimal.

Taking 200mcg of selenium daily has helped too. Possibly because T4 to T3 conversion is selenium dependent. You could try it. Some people on this forum order T3 from abroad.

[Havana2426 in reply to Nanaedake]

Ok thanks I have posted other results to help me understand what is happening with my levels. I can't make any sense out of them.

[Greentrees1]

I'm not qualified to make a judgement, but i never felt well with such low ft3. Like you, i don't convert well, so levo alone couldn't raise my t3 enough to feel well.

I would suggest seeing a different endo.

[Havana2426]

Endo has also written to my GP saying I have generalised anxiety disorder. I don't know where he has gotten this from. I was given the diagnosis of generalised anxiety disorder in 2011 originally and when I was diagnosed hypothyroid in 2012 this diagnosis was dropped. Now it has reappeared on the letter addressed to me and my GP and I started seeing my endo this year.

[Nanaedake in reply to Havana2426]

Well, I would write to the Endo and copy the letter to the GP and ask what evidence the Endo has to make such a diagnosis? What blood tests or clinical evaluation have been undertaken to prove such a diagnosis? Explain that you do not accept the diagnosis. In fact, is an Endo or a GP qualified to diagnose a mental health condition? Surely it should be a psychiatrist who makes such a diagnosis?

This is a common method that GP's and Endo's use to rationalise their lack of knowledge about thyroid conditions and their inability to address underlying nutritional and physiological problems that prevent people with thyroid conditions from regaining their health. If you did actually have a mental health condition you could be entitled to take T3 since some conditions are actually treated using T3 and other psychotropic drugs. The NHS really is very inconsistent.

This approach of attributing symptoms to an anxiety condition smacks of patient blaming and I would strongly refute it or it will end up on your records. I would also check and ensure that the GP has not recorded it and ensure that your letter refuting it is added to the letter the endo has sent to the GP.

[Greentrees1]

Your june results look out of line. Are you having your blood test at the same time of day, Ideally before 9am? Also, are you leaving iff the levo 24hrs and t3 12hrs before the blood test?

[Havana2426 in reply to Greentrees1]

Yes I have all bloods done at the same time of day, fasting, first thing in the morning and I leave levothyroxine 24 hours before blood test and T3 12 hours before blood test

[greygoose in reply to Havana2426]

Those results in June look very much like a Hashi's 'hyper' swing. Do you have high antibodies?

[Havana2426 in reply to greygoose]

Thyroid antibodies are

Thyroid peroxidase antibodies >1300 (<34)

Thyroglobulin antibodies 258.3 (<115)

[greygoose in reply to Havana2426]

OK, so there you have it. Anomalies in your results are caused by your Hashi's.

[Greentrees1]

Maybe you were having a hashimotos storn in june then.

[SeasideSusie Remembering]

Havana2426 Have you had thyroid antibodies tested? Those results seem to indicate Hashimoto's. You're never going to feel better on 75mcg Levo. Your endo is an *rse who doesn't know how to treat hypothyroidism.

[Havana2426 in reply to SeasideSusie]

Thyroid antibodies are

Thyroid peroxidase antibodies >1300 (<34)

Thyroglobulin antibodies 258.3 (<115)

[SeasideSusie Remembering in reply to Havana2426]

Havana2426 So there you are, your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results and this explains all the differences in your test results. Look at the difference here when on a higher dose of Levo your TSH is way over range and your free Ts have dropped right down:

FEB 2016 (125mcg levothyroxine/10mcg T3)

TSH 7.80 (0.2 - 4.2)

FREE T4 12.9 (12 - 22)

FREE T3 4.1 (3.1 - 6.8)

DEC 2015 (75mcg levothyroxine/10mcg T3)

TSH <0.02 (0.2 - 4.2)

FREE T4 20.3 (12 - 22)

FREE T3 5.2 (3.1 - 6.8)

When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP knows about Hashi's and these hyper swings, then they panic and reduce or stop your thyroid meds.

The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.

Your endo doesn't appear to know or understand this and has messed around with your meds and seems to have made a right pig's ear of it.

With your August results of

AUG 2017 (150mcg levothyroxine)

TSH 0.03 (0.27 - 4.20)

FREE T4 21.1 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

it looks as though he panicked at your suppressed TSH. However, your FT4 is in range yet your FT3 is at the bottom of the range. Instead of reducing your Levo to 75mcg, what he should have done is reduced your Levo by 25mcg and given you back some T3, that would have reduced your FT4 a bit and increased your FT3.

Read and learn all about Hashi's, because your endo either doesn't understand it, doesn't know anything about it, or dismisses antibodies as being unimportant and you are going to have to help yourself.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

[Nanaedake]

Havana2426 SeasideSusie has explained your thyroid results and your condition very clearly. I hope your GP has the time to listen and understand because I think you should dump your Endo. Hopefully you can work with your GP to manage your Hashimotos successfully.

[SlowDragon Administrator]

Do you have recent test results for vitamin D, folate, ferritin and B12

If they are too low they stop Thyroid hormones working.

Have these been tested, if not ask that they are. Always get actual results and ranges.

As you have Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/why-changi...

scdlifestyle.com/2014/08/th...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

[Havana2426 in reply to SlowDragon]

Hi yes I have results of these, I will post them if necessary. I receive B12 injections every 3 months for symptomatic relief of B12 deficiency symptoms. I had my first one in June 2017 and haven't felt any better.

[SlowDragon Administrator in reply to Havana2426]

Post this on PAS health Unlocked they are B12 experts and give you good advice

healthunlocked.com/pasoc

With B12 injections I think you should have a whole series of injections to start off

You're saying you have not had any more injections than one in June?

[Havana2426 in reply to SlowDragon]

That's right

[SlowDragon Administrator in reply to Havana2426]

Post all your vitamin results in new post on here

[SlowDragon Administrator]

An endo is not qualified to diagnose you with mental health issues.

I would suggest you formally in writing object to this being recorded on your file. If necessary agree to see psychologist, they will soon give you clean bill of health

Been there, done that, over 20 years ago. I finally got my second referral to endo of my choice, (which had been refused before) after psychologist gave glowing report. Previous endo said I had "elected to be in a wheelchair".