Symptoms not thyroid: Hi I am getting fed up... - Thyroid UK

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Symptoms not thyroid


I am getting fed up with my endo, she has told me my symptoms are not thyroid, list of them is below.



Trapped wind


Dry skin

Hair loss

Muscle weakness and cramps

Ankle swelling

Irregular heart rate


Pins and needles in feet and legs


Heavy periods

Weight gain

Brittle and wiry hair

Puffy eyes

Feeling cold

So if they are not thyroid, am I simply a hypochondriac? Diagnosed 2011 and take 150mcg levothyroxine and 10mcg T3 which I have been taking since July 2016. Thank you

TSH 3.78 (0.27 - 4.20 mIU/L)

FREE T4 16.2 (12.00 - 22.00 pmol/L)

FREE T3 4.5 (3.10 - 6.80 pmol/L)

20 Replies

I have many of your symptoms.

My initial diagnosis ( Dec 2015) was hyperthyroidism and further tests confirmed Graves thyrotoxicosis ( April 2016).

Despite taking medication, many of my symptoms remained - breathlessness, stomach issues, joint pain, dizziness, swollen ankles, muscle weakness and pain, loss of balance and constant nausea.

I subsequently had an endoscopy and adrenal function tests to rule these out as the cause of some of the symptoms. My medication has recently been halved as a precursor to discontinuing as thyroid appears to be under control and my GP has now diagnosed Chronic fatigue and IBS.

Sadly, it appears to be a process of elimination and it is only now that my thyroid cannot be the cause of my symptoms that they are being attributed to other causes.

Visit your GP and be persistent. I have explained to other people that although the diagnosis is of little help in terms of how my symptoms impact my daily life, it is invaluable in that I know I am not imagining them and at least there is some reason for them. Many endocrine / auto immune diseases and symptoms are related or similar, so don't give up.


Lelani I don't think your endo knows much about Hypothyroidism, I expect she is a diabetes specialist, most of them are.

You are undermedicated to have such a high TSH and such low free Ts. 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 *when on Levo only*. And T3 into the mix and TSH may become suppressed, FT4 will generally be lowish in range and FT3 should be near the top of the range.

So you could do with an increase in your meds, and I think a bit more T3 would be a good idea.


Also, some of your symptoms are indicative of low nutrient levels. Have you had the following tested, if not ask for them to be done

Vit D




And maybe iron panel, full blood count and Haemoglobin.

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Thanks I have results of these do I post them?




Ok will do a new post


Do you have results of nutrients blood tests with dates?


Yes they are in another post but I can put them here, they were done 3 months ago and they are due to be retested.

Serum ferritin 67 (15 - 150) given iron tablets after this result came back with below range MCV. Iron deficiency treated with iron infusion the year before

Serum folate 3.2 (2.5 - 19.5) taking folic acid

Serum B12 336 (190 - 900)

Serum selenium 0.93 (0.89 - 1.65) taking 200ug selenium after result

Serum magnesium 0.81 (0.70 - 1.00) taking magnesium spray after result

Vitam D 67.7 (50 - 75 vitamin D may be suboptimal) taking 6000iu D3

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They almost certainly are.

You are under medicated to have TSH this high. The aim is to get a TSH near bottom of range (around 1)

You may have poor gut function due to low stomach acid meaning your body is not able to absorb the Levo.

Do you have recent tests for vitamin D, folate, B12 and ferritin? If these are too low then we can't use the thyroid hormones in cells

If got vitamin tests post results here including ranges. If not get GP to test

Do you know if you have high thyroid antibodies? Have they ever been tested. If high then the cause of thyroid is autoimmune thyroid disease also called Hashimoto's.

Many medics don't understand Hashimoto's. It affects our digestive system, causing leaky gut, low vitamins, low stomach acid and very often gluten intolerance.

A small percentage with Hashimoto's are coeliac, but the majority are gluten intolerant. Up to you if you want to ask GP for coeliac blood test. It's very unreliable. Only true way of diagnosing coeliac is with endoscopy. Need to eat high level gluten for six weeks beforehand.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. T3 don't take in the 12 hours prior to test.

Pins & needles is suggesting low B12.

Breathlessness can be low ferritin

Cramp low magnesium

Read lots of SeasideSusie replies on vitamins and necessary supplements

......I see she's already on the case !


Thanks I have high antibodies


TG ANTIBODIES 298.3 (<115 IU/mL)


You have autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin which is a protein thought to trigger antibody attacks. Supplementing with selenium L-selenomethionine 200mcg daily and keeping TSH suppressed can also help reduce the antibodies.


Ok thanks I was going to undergo the gluten challenge for a coeliac blood test but if this is likely to delay my recovery (because of the 6 weeks I have to do it for) I won't do it.


Well even if the result was negative for coeliac you'd still want to go gluten free.

Personally I wouldn't wait.

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Thanks I am already taking selenium but not because of the antibodies. It looked low in range to me.


Hi Lelani

What date were these blood tests done please. Do you also have previous results with date of tests.

When was your last Levothyroxine dose increase to the present 150mcg?

Are you taking any supplements or any other medication? Do you take any at the same time as Levothyroxine.

The TSH is too high for someone on medication for so long.


Thanks the blood tests were done in January 2016 and my last increase was 125mcg levothyroxine and 10mcg T3 back in January 2017

TSH 1.46 (0.2 - 4.2)

FREE T4 15.5 (12 - 22)

FREE T3 3.8 (3.1 - 6.8)

Then 100mcg levothyroxine and 10mcg T3 in November 2016

TSH 0.03 (0.2 - 4.2)

FREE T4 22.7 (12 - 22)

FREE T3 4.1 (3.1 - 6.8)

75mcg levothyroxine and 10mcg T3 in September 2016

TSH <0.02 (0.2 - 4.2)

FREE T4 20.5 (12 - 22)

FREE T3 5.2 (3.1 - 6.8)

75mcg levothyroxine and 10mcg T3 in August 2016

TSH <0.02 (0.2 - 4.2)

FREE T4 20.7 (12 - 22)

FREE T3 5.1 (3.1 - 6.8)

175mcg levothyroxine in June 2016

TSH 1.27 (0.2 - 4.2)

FREE T4 19.5 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

I take iron tablets and folic acid and selenium and vitamin D3 4 hours away from thyroid meds and I take magnesium before I go to bed.

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May 2016 taking 150mcg levothyroxine

TSH 5.4 (0.2 - 4.2)

FREE T4 13.3 (12 - 22)

FREE T3 4.3 (3.1 - 6.8)

Feb 2016 taking 50mcg levothyroxine

TSH 6.80 (0.2 - 4.2)

FREE T4 13.1 (12 - 22)

FREE T3 4.5 (3.1 - 6.8)

Jan 2016 taking 25mcg levothyroxine

TSH 6.15 (0.2 - 4.2)

FREE T4 12.1 (12 - 22)

FREE T3 4.2 (3.1 - 6.8)

June 2015 taking 125mcg levothyroxine

TSH 6.23 (0.2 - 4.2)

FREE T4 25.7 (12 - 22)

FREE T3 5.6 (3.1 - 6.8)

Jan 2015 taking 100mcg levothyroxine

TSH 3.86 (0.2 - 4.2)

FREE T4 14.1 (12 - 22)

FREE T3 4.2 (3.1 - 6.8)

Nov 2014 taking 75mcg levothyroxine

TSH 7.10 (0.2 - 4.2)

FREE T4 15.7 (12 - 22)

FREE T3 4.1 (3.1 - 6.8)

Aug 2014 taking 50mcg levothyroxine

TSH 0.01 (0.2 - 4.2)

FREE T4 26.3 (12 - 22)

FREE T3 6.2 (3.1 - 6.8)

May 2014 taking no levothyroxine

TSH 5.01 (0.2 - 4.2)

FREE T4 18.7 (12 - 22)

Feb 2014 taking no levothyroxine

TSH 1.89 (0.2 - 4.2)

FREE T4 13.4 (12 - 22)

FREE T3 4.2 (3.1 - 6.8)

Nov 2013 taking 125mcg levothyroxine

TSH 4.6 (0.2 - 4.2)

FREE T4 15.5 (12 - 22)

FREE T3 5.5 (3.1 - 6.8)

Aug 2013 taking 100mcg levothyroxine

TSH 4.5 (0.2 - 4.2)

FREE T4 15.4 (12 - 22)

Jun 2013 taking 75mcg levothyroxine

TSH 2.70 (0.2 - 4.2)

Jan 2013 taking 75mcg levothyroxine

TSH 3.68 (0.2 - 4.2)

Nov 2012 taking 75mcg levothyroxine

TSH 0.54 (0.2 - 4.2)

Jan 2012 taking 75mcg levothyroxine

TSH 2.2 (0.2 - 4.2)

Nov 2011 taking 50mcg levothyroxine

TSH 0.73 (0.2 - 4.2)

Sep 2011 before diagnosis

TSH 49 (0.2 - 4.2)

FREE T4 10.7 (12 - 22)

FREE T3 2.6 (3.1 - 6.8)

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HiddenThis reply has been deleted

No I don't use any form of aluminium or non stick coated cookware or foil


T3 is the easier option, in that more endocrinologist will prescribe. Plus with Hashimoto's T3 is often preferred to NDT according to Izabella Wentz the Thyroid Pharmacist. She says NDT can make antibodies rise.

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For what is you use fluoride toothpaste? I know a lot of thyroid friends that don't think about avoiding this...could perhaps just add a bit of help:). And yes, they are not so easy to get hold of, but health stores do have them and so does Waitrose from memory.


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