Feel very alone, looking for support

Hi I have just joined and I am hoping to get some support here since I feel very alone with being hypothyroid.

I was diagnosed 10 years ago when I was 22 and had my dose moved up and down so many times that I feel messed about. My endo is in charge of dosing but my GP has been intervening with changing my dose and I feel worse and not better since this has happened. I have black rings under my eyes, hands and feet ice cold, IBS type symptoms, thyroid swelling which I cover up with scarves and turtlenecks, blood rushes, tinnitus, nails becoming flaky, feeling breathless, looking so washed out and tired that even make up and concealer doesn't cover how ill I look and I have people at work asking me if I'm ok.

Advice welcome, thank you

Aug 2017 (175mcg levo reduced to 100mcg by GP without the endos permission)

TSH *0.03 mIU/L (0.2 - 4.2)

FT4 21.3 pmol/L (12 - 22)

FT3 4.2 pmol/L (3.1 - 6.8)

Oct 2017 (100mcg levo)

TSH *6.20 mIU/L (0.2 - 4.2)

FT4 13.8 pmol/L (12 - 22)

FT3 4.0 pmol/L (3.1 - 6.8)

13 Replies
oldestnewest

Skyla573

Think of a polite way to tell your GP to butt out. Endo trumps GP, endo is specialist, GP is generalist. What endo says goes where dosing is concerned so tell your GP that you won't reduce unless your endo specifically tells you.

There was nothing wrong with your August results that warranted a reduction. FT4 was in range, FT3 was low (could do with T3 added) and TSH below range because you are taking replacement thyroid hormone which is being detected by your pituitary so it doesn't need to send a signal (TSH) to your thyroid to produce any.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well - see thyroiduk.org.uk/tuk/about_... > Treatment Options:

"Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist. He has recently written an updated article saying some people need T3 added to their Levo. SlowDragon has a link to that article.

Your latest TSH shows that you are undermedicated and need a dose increase. Personally, I would intact your endo and ask him to instruct your GP to increase your Levo immediately then to stop changing your dose.

Have you had thyroid antibodies tested - TPO and TG? Do you have Hashimoto's?

1 like
Reply

I think I have Hashimotos. I asked one GP and she said she was refusing to treat me.

TPO antibodies 288 IU/mL (<34)

TG antibodies 579.3 IU/mL (<115)

Reply

Skyla

Refusing to treat you for what?

Yes, you do have Hashi's, this is where antibodies attack the thyroid and gradually destroy it, causing fluctuations in symptoms and test results. Doctors don't seem to attach much importance to antibodies and don't understand how it affects the patient.

You can help reduce the antibodies by adopting a strict gluten free diet. Gluten contains gliadin which is a protein thought to trigger antibody attacks. Supplementing with selenium L-selenomethionine 200mcg daily can also help reduce antibodies, as can keeping TSH suppressed.

chriskresser.com/the-gluten...

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

Hashi's and gut/absorption problems tend to go hand in hand and very often leads to nutrient deficiencies. Have you had vitamins and minerals tested, if so please post results with reference ranges and say if you are supposed!end ring, what with and how long for:

Vit D

B12

Folate

Ferritin

Iron panel

Full blood count

Reply

Well she she said she was refusing to treat me as a patient and said she would strike me off the patient register for researching on the internet when I told her my antibodies confirmed hashimotos and asked if she agreed with that and for her thoughts on the antibody levels

Reply

God, they have such big egos!!

It's a free country, we can read what we like but best not to mention the internet or forums. Best advice is to say you have taken advice from NHS Choices recommended source of information about thyroid disorders (which is Thyroid UK).

Reply

Has she struck you off? If so you need to find another doctor - preferably one who understands thyroid problems better than she does, so that may be a good thing.

See this page from NHS choices

nhs.uk/chq/Pages/2556.aspx?...

O found it when I googled for 'NHS patient struck off' and you may find some other useful info there.

You could also complain to the practice manager.

1 like
Reply

Ferritin last done in June 2017

Folate last done in November 2016

Vitamin B12 last done in February 2017

Vitamin D last done in June 2017

Are they still ok to post?

Reply

Yes, and say what you're taking.

Reply

June 2017

Ferritin 61.3 ug/L (30 - 400) not taking iron but diagnosed anaemic 2016 and still show anaemic results

November 2016

Folate 2.3 ug/L (2.5 - 19.5) prescribed folic acid after result

February 2017

Vitamin B12 339 pg/L (190 - 900) haematologist said since level below 400 I might benefit from B12 injections

June 2017

Vitamin D 70.1 nmol/L (50 - 75 suboptimal) took matters into my own hands and started taking 8000iu in oral sprays back in October 2016 since GP not helpful with vit D dose and prescribed me 800iu

All of the above being retested Friday along with thyroid, can I post these when they come through?

Reply

Skyla

Ferritin you can raise by eating liver regularly, maximum 200g per week. It needs to be at least 70 for thyroid hormone to work, recommended is half way through range.

For iron deficiency anaemia you can see the recommended treatment here

cks.nice.org.uk/anaemia-iro...

"How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment."

You need to discuss your iron deficiency anaemia with your GP and ask for appropriate treatment or referral to a haematologist.

**

B12/Folate

Are you getting the B12 injections that were suggested? If GP won't do them, ask the haematologist.

Folic acid should be delayed until after B12 started.

Do you have signs of B12 Deficiency b12deficiency.info/signs-an... If so post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

**

Vit D - the recommended level is 100-150nmol/L. You could continue with your D3 spray and retest in 3 months. Once you reach the recommended level you need to find your maintenance dose which may be 2000iu, maybe more or less, it's trial and error so retest once or twice a year to keep within the recommended range.

D3 has important cofactors 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 to take it in the evening, four hours away from thyroid meds naturalnews.com/046401_magn...

**

So that gives you an idea what to look for when you have your new results, but post them anyway and maybe link back to this thread as a reminder.

Reply

Hi I can't eat liver because I don't like the taste of it and I can't absorb iron from it.

Yes I take my second injection for B12 in January 2018 thanks

Reply

Your doctor is out of her depth! Can you try another doctor in the practise? Refusing to treat you for no good reason isn't on.

Reply

So when did your GP tell you to reduce dose?

Presumably you did so hence the worse results.

Your 175mcg dose in August was fine, in fact T3 was too low.

Like many of us with Hashimoto's, your conversion is poor and probably need addition of small dose of T3

So you now need to increase Levo back up in 25mcg steps until TSH is around one (or less) and FT4 towards top of range and FT3 at least half way in range

Highly likely your vitamin results are now absolutely dire because ignorant GP interfered directly against endo (the expert)

It's essential to get vitamin levels back up, along side increases in Levo. They both work together

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

drknews.com/changing-your-d...

Get copy of this article Below from Thyroid UK (in New Year, office closed now for Christmas )

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Or just find a different, less ignorant GP.

Prof Toft - article just published now saying T3 is likely essential for many (or high FT4) but T3 likely to be much better, more stable

Essential to get vitamin levels up first, and Levo back to reasonable dose and very likely necessary to be strictly gluten free too

rcpe.ac.uk/sites/default/fi...

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