Feeling really unwell advice please :( - Thyroid UK

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Feeling really unwell advice please :(

Gemdi profile image
25 Replies

Hi

New member here, I am feeling really unwell at the moment, I have hypothyroidism which was diagnosed 2013. I take 150mcg levothyroxine and I am currently laid up in a blanket crippled with period pain, I am on the first day of my cycle and I have just spent 3 hours sleeping off the cramps. Partner has said I look pale and for me to be pale on day one of my cycle is worrying. I have ringing in my ears, tiredness, headaches, dizziness, depression, bone pain, muscle weakness.

Thanks for reading.

TSH 5.6 mIU/L (0.2 - 4.2)

Free T4 13.9 pmol/L (12.0 - 22.0)

Free T3 3.2 pmol/L (3.1 - 6.8)

Thyroid peroxidase antibody 208.3 IU/mL (<34)

Thyroglobulin antibody >1300 IU/mL (<115)

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Gemdi profile image
Gemdi
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25 Replies
Treepie profile image
Treepie

You are undermedicated.TSH should be about 1 or below. FT4 and FT3 need to be in. the upper half of the range.Have you had antibodies tested? Do you have results for ferritin,folate B12 and D3 ? all need to be good to get the best from the levo. See Seaside Susies posts.

Gemdi profile image
Gemdi in reply to Treepie

Antibodies are

Thyroid peroxidase antibody 208.3 IU/mL (<34)

Thyroglobulin antibody >1300 IU/mL (<115)

Treepie profile image
Treepie in reply to Gemdi

That is auto immune thyroiditis aka Hashimotos .

You may find going gluten free helps .

Gemdi profile image
Gemdi

Was meant to have had my dose increased to 175mcg levothyroxine 2 weeks ago but endo did not send my prescription off until Thursday just gone

SeasideSusie profile image
SeasideSusieRemembering

Gemdi

TSH 5.6 mIU/L (0.2 - 4.2)

Free T4 13.9 pmol/L (12.0 - 22.0)

Free T3 3.2 pmol/L (3.1 - 6.8)

You are very undermedicated to have these results and it's a shame your endo didn't hand you the prescription rather than send it. Make sure that when you've been on the increased dose for 6 weeks you get a new blood test and you will very likely need another 25mcg increase. Continue with 6-8 weekly retesting/increases until you feel well. Can your GP increase your meds between your endo visits if you are still symptomatic with less than optimal test results? The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.

**

Thyroid peroxidase antibody 208.3 IU/mL (<34)

Thyroglobulin antibody >1300 IU/mL (<115)

Has anyone told you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. Unfortunately, most doctors attach little or no importance to antibodies and dismiss them so you should read and learn so that you can help yourself where your Hashi's is concerned.

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_...

**

Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrient levels are the result. If nutrients are low then thyroid hormone can't work, we need optimal levels. Some of your symptoms indicate low levels. If you've had vitamins and minerals tested, please post results with reference ranges, say if you are supplementing and what dose:

Vit D

B12

Folate

Ferritin

Iron Panel

Full blood count

Gemdi profile image
Gemdi in reply to SeasideSusie

Thanks GP won't increase my meds between endo visits

Gemdi profile image
Gemdi in reply to SeasideSusie

Endo has authorisation to adjust my dose and when he ordered the thyroid test before this one the GP altered my dose without my endos permission

SeasideSusie profile image
SeasideSusieRemembering in reply to Gemdi

If your GP wont increase your thyroid meds, then you need him/her or yourself to chase up the endo and get your increase urgently.

Gemdi profile image
Gemdi

Iron anaemia treated intravenously 2016 by haematologist

After infusion

Ferritin 197 (15 - 150)

6 week follow-up June 2016

Ferritin 146 (15 - 150)

Iron 12.2 (6 - 26)

Transferrin saturation 18 (12 - 45)

September 2016

Ferritin 103.5 (15 - 150)

November 2016

Ferritin 110.3 (15 - 150)

January 2017

Ferritin 95.8 (15 - 150)

August 2017

Ferritin 60.8 (15 - 150)

Iron 10 (6 - 26)

Transferrin saturation 20 (12 - 45)

I'm guessing ferritin lower now?

SeasideSusie profile image
SeasideSusieRemembering in reply to Gemdi

Can you please say if you supplementing to maintain levels please Gemdi

Also, were the other nutrients tested?

Gemdi profile image
Gemdi in reply to SeasideSusie

Not supplementing iron, other levels in other posts I think

SeasideSusie profile image
SeasideSusieRemembering in reply to Gemdi

Gemdi I have never understood why, when doctors prescribe something to raise levels, then once those levels have been achieved nothing is done to maintain them. They seem to have no problem with allowing the patient to yoyo up and down with levels which is ridiculous.

As you can see your ferritin has fallen steadily over the months since your infusion and now it's below the level needed for thyroid hormone to work. It needs to be at least 70. You 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...

Did you have a full blood count done? Was iron deficiency anaemia ever diagnosed? Do you have MCV and MCHC results?

Gemdi profile image
Gemdi in reply to SeasideSusie

Diagnosed with iron anaemia November 2016. Complete blood count last done in August 2017

Red blood cell count 4.41 (3.8 - 5.8)

White cell count 7.13 (4 - 11)

Haemoglobin 120 (115 - 150)

Haematocrit 0.41 (0.37 - 0.47)

MCV 77.5 (80 - 98)

MCHC 376 (310 - 350)

MCH 28.2 (28 - 32)

Platelets 256 (150 - 400)

SeasideSusie profile image
SeasideSusieRemembering in reply to Gemdi

MCV 77.5 (80 - 98)

MCHC 376 (310 - 350)

This suggests you still have iron deficiency anaemia. If you are not being treated for it then you need to discuss this with your doctor.

NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

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.

Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

Gemdi profile image
Gemdi in reply to SeasideSusie

Thanks I was prescribed ferrous fumarate but they upset my stomach

SeasideSusie profile image
SeasideSusieRemembering in reply to Gemdi

Then ask for a different form. The guidelines I linked to say

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

Your doctor should be able to find something as an alternative.

Gemdi profile image
Gemdi

November 2013

Folate 3.8 ug/L (4.6 - 18.7)

August 2014

Folate 4.7 (4.6 - 18.7)

January 2015

Folate 5.7 (4.6 - 18.7)

May 2015

Folate 6.2 (4.6 - 18.7)

November 2015

Folate 11.2 (4.6 - 18.7)

January 2016

Folate 5.9 (4.6 - 18.7)

November 2016

Folate 2.1 (2.5 - 19.5)

January 2017 given folic acid 5mg

Folate >20 (2.5 - 19.5)

October 2017

Folate 1.9 (2.5 - 19.5)

Gemdi profile image
Gemdi

December 2013 prescribed 800iu

Vitamin D 38.3 nmol/L (25 - 50 deficient)

May 2014 taking 3000iu since March 2014

Vitamin D 59.3 (50 - 75 suboptimal)

October 2014

Vitamin D 70.2 (50 - 75 suboptimal)

March 2015

Vitamin D 53.2 (50 - 75 suboptimal)

December 2015

Vitamin D 72.1 (50 - 75 suboptimal)

June 2017

Vitamin D 70.3 (50 - 75 suboptimal)

Gemdi profile image
Gemdi

December 2013

Vitamin B12 363 (190 - 900)

May 2014

Vitamin B12 346 (190 - 900)

January 2015

Vitamin B12 381 (190 - 900)

March 2015

Vitamin B12 362 (190 - 900)

November 2016

Vitamin B12 547 (190 - 900)

January 2017 before B12 injection given

Vitamin B12 443 (190 - 900)

SeasideSusie profile image
SeasideSusieRemembering

Gemdi Let's just take your latest results

January 2017 given folic acid 5mg

Folate >20 (2.5 - 19.5)

October 2017 Folate 1.9 (2.5 - 19.5)

Was the folic acid was taken off you and your level has plummeted now that you're no longer taking it?

January 2017 before B12 injection given

Vitamin B12 443 (190 - 900)

Have you had just the 1 injection or are you having them regularly?

June 2017 Vitamin D 70.3 (50 - 75 suboptimal)

Are you currently taking D3, if so what dose?

Gemdi profile image
Gemdi in reply to SeasideSusie

Thanks

Yes folic acid taken off me now. Had just 1 B12 injection, due another. I take 3000iu vitamin D

SeasideSusie profile image
SeasideSusieRemembering in reply to Gemdi

Well, you obviously need something to raise and maintain your folate level considering it's plunged below range and you are folate deficient again.

As you're having B12 injections, then you need a B Complex to balance all the B vitamins. If you get a decent one with 400mcg methylfolate that will help raise your folate level. I would normally suggest Thorne Basic B but as you have Hashi's you very likely have an absorption problem and you would be better off wth sublingual supplements to take under the tongue so that they bypass the stomach. One such B Complex is BioCare Nutrisorb Liquid Methyl B Complex, you can search for others.

**

Your 3000iu daily D3 should be fine, but if you've been taking it all along your level has been up and down quite a lot. And again, if you've been taking tablets/capsules they wont have been that well absorbed so you might want to consider an oral spray such as Better You.

Once you reach the level recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended 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 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 helps D3 to work and 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.

Better You actually do a D3/K2-MK7 combined spray which would save you taking separate supplements for those betteryou.com/vitamin-d-k2 Or Nutri Advanced do a liquid D3/K2-MK7 which you take as drops lifestyle-labs.com/products...

Gemdi profile image
Gemdi in reply to SeasideSusie

Thanks no have only just started taking 3000iu and it is Better You spray. I will restart folic acid

Gemdi profile image
Gemdi in reply to SeasideSusie

B12 injection every 3 months

SeasideSusie profile image
SeasideSusieRemembering in reply to Gemdi

If you start to flag between injections, you could top up with either sublingual methylcobalamin or buy your own injections. The Pernicious Anaemia Society forum would be able to advise on that healthunlocked.com/pasoc

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