I am getting fed up with my endo, she has told me my symptoms are not thyroid, list of them is below.
Constipation
Fatigue
Trapped wind
Bloating
Dry skin
Hair loss
Muscle weakness and cramps
Ankle swelling
Irregular heart rate
Dizziness
Pins and needles in feet and legs
Breathlessness
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)
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Lelani
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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
B12
Folate
Ferritin
And maybe iron panel, full blood count and Haemoglobin.
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
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.
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.
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.
For what is worth...do 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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Elevated thyroid antibodies...advice please!!
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