Hi everyone, this is my first post, although I have been reading posts from here since being diagnosed in June, with an under active thyroid and low vitamin d. I'm sorry for the following essay. My story starts back in April of 2014, when my hair started to fall out in hand falls, then came tiredness and body aches and swelling of my eyes, hands and ankles, I spoke to the doctor by phone who said my hair loss was just an unfortunate side effect of life, she couldn't explain the other symptoms, I ambled along for the next few months when the symptoms above became progressively worst and new symptoms developed like a nasty skin disease that started on my neck, I can only describe as giraffe like 😳 This by September of 2014 had almost completely covered my neck. i again rang the doctors who order some blood tests, they again told me nothing was wrong, it was all in my head. By the beginning of December I started having pains in my chest, so I was referred to a heart consultant, who I saw in January 2015, he decided to do a stress echo, which I had in February and a very strange thing happened the adrenaline wouldn't stress my heart at all so they added in another drug to get my heart to beat faster. In the April I had an angiogram, which was totally unnecessary as my heart was fine. So now I come to June 2015 and I'm basically catatonic, I can't remember one day from the next day, I'm one big swollen mass, I've gone from a size 10 to a size 14, I have two little butterfly marks on both cheekbones, the pain all over my body is immense, I have terrible cramping in my legs and arms. I now have bald patches, lost my eyebrows and my lovely giraffe skin is now across my back and shoulders and down my arms, these are to name but a few of the horrific symptoms that were happening to me. So I bite the bullet and ring the doctors again, this time I tell them I think it's my thyroid that's causing all my problems, so we go through the blood test routine again and low and behold , this time it flags up as under active thyroid and severely low in vitamin d. The doctor put me on levothyroxine 100mg and a high dose ten week course of vitamin d and told me to get tested again in September. Things have improved but not to the extent of being well enough to be a normal person again. So I was surprised and shocked that after my September results came back my doctor said yes absolutely fine, we could drop you to 75mg, when I questioned this and told her how I felt, what symptoms were still very much there, I was told to get tested again in 3 months. I'm sorry for the long story but feel like I'm hitting my head against a brick wall. I have a meeting with my doctor this Thursday afternoon and would really appreciate some help from you guys. Here are my blood results from the last three times I've had them done, I'm not sure what ones you want to see, so let me know if I've missed one, unfortunately the tests they've taken haven't been consistent.
September 2014
Serum free T4 11.7. (9.0 - 22.0)
Serum TSH level. 2.6. (0.35 - 5.00)
Serum ferritin. 39. (10 - 200)
June 2015
Serum free T4. 11.9. (12 - 22.0)
Serum TSH level. 13.03. (0.27 - 4.20)
Serum vitamin d. 18. (50 - 200)
Serum vitamin b12. 434. (191 - 663)
Serum folate. 8.8. (4.6 - 18.7)
September 2015
Serum free T4. 20.4. (9.0 - 22.0)
Serum TSH Level. 0.27. ( 0.35 - 5.00)
Serum Free T3. 5.9. (2.6 - 5.7)
Serum vitamin d. 106. (50 - 200)
Serum vitamin b12. 493. (200 - 910)
Serum folate. 8.9. (3.0 - 20.0)
Thank you in advance for any help you can give me.
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Nikki69
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Yet another GP who would seem to believe that a mid range TSH is what should be aimed for... I despair of modern medical training.
If the GP knew her stuff, she'd know that most folk on Levo feel better when their TSH is close to 1 (and below 1 at that). You need a 25mcg dose raise, not a reduction.
You need iron tablets to raise your ferritin to at least 70 and although your B12 is not as bad as many we see here, it could still do with being a bit higher.
I'm so sorry you're having to fight for decent treatment x
No, not at all, trying to get them to do anything is like getting blood from a stone, I haven't even a clue as to why my thyroid gave up working properly and when I asked if it was the antibodies problem, she said it wasn't and that it didn't really matter why as the levo is a cure for all. What is lupus?
Lupus is autoimmune disease. The butterfly rash one main symptom of it. Unfortunately I don't know more as I just remembered I have read about it and saw you mentioning that rash.
I hope you find proper doctor. I understand you feel anxious no one giving you proper answers. People on this forum fortunate knows a lot and give you good advices.
Nikki, when you reply to a member use the orange reply tab and they're sent email and on-site notifications you've responded.
Doctors either don't know or don't bother to tell patients that Levothyroxine peaks in the blood for up to six hours which can give a false high FT3 and FT4 blood test reading. Your TSH is slightly below range which probably isn't due to taking your morning dose, but FT3 is mildly elevated, which probably is.
If your GP suggests reducing dose tell her you took Levothyroxine a couple of hours before the test and think it will have skewed results and ask to remain on the same dose until you can retest.
Arrange future blood tests early in the morning and fast (water only) as TSH is highest early and lower postprandially. The higher your TSH shows the more likely you are to get a dose increase and avoid a dose reduction. Take Levothyroxine after the blood draw.
Vitamin D is good now but levels will drop Oct-Apr as ultraviolet light is too low to stimulate vitD. Supplement 5,000iu alternate days to maintain levels until April.
B12 is unlikely to be deficient but PA Society advise 1,000 is optimal. Supplement 1,000mcg methylcobalamin sublngual lozenges, spray or patches and take a B Complex vitamin to improve folate and keep the other B vitamins balanced.
Nikki, 90% of hypothyroidism is caused by autoimmune thyroid disease (Hashimoto's). Ask your GP whether thyroid peroxidase antibodies were tested when you were diagnosed and the results and range. If not tested, ask whether they can be.
The other 10% is made up of congenital hypothyroidism, thyroidectomised patients, patients who have had RAI, drug induced hypothyroidism and idiopathic ie unknown.
Puberty, pregnancy and menopause are common hypothyroid triggers in girls and women.
Hi clutter, thanks for information, I will attempt to get all my bits and pieces up to optimal levels. My doctor said I didn't have hashimotos, when I asked, she also told me it didn't matter why its dysfunctional either, just to take the levo
Nikki, your GP can only know you don't have Hashimoto's if thyroid peroxidase antibodies are negative. Ask for the result and range.
It may not matter to her why your thyroid isn't functioning but it matters to patients. If it is autoimmune you may want to make dietary changes and if it isn't autoimmune, it is idiopathic. Either way, Levothyroxine will replace the low thyroid hormone.
Hello Nikki, one of the symptoms of compromised adrenal glands is darkened skin (maybe giraffe skin is this?) and all of the other symptoms you describe fit too - a poorly functioning adrenal gland Can cause poor thyroid function (so I have read) and the adrenals should be addressed before the thyroid issues it causes. I would have thought it worth discussing this possibility with your GP (who may not have a clue so please read up on it before you go!) and requesting Adrenal function tests which check your cortisol levels, good luck!
Thank you for the information on the adrenal glands, I had no idea that they were tied to the thyroid, I'm seeing the doctor tomorrow so will talk to her about it, whether I get anywhere with her, we will have to wait and see
First thing I would change your doctor. It is always surprising to me that doctors appear to be completely unaware of the clinical symptoms of thyroid gland dysfunction. Considering no-one on this earth can survive if they don't get thyroid hormone replacements (usually levothyroxine).
We have to read and learn in order to recover our health. Before the blood tests came in in the 1960's doctors knew everything about detecting a thyroid gland problem and we were given natural dessicated thyroid hormones (since 1892) and given sufficient until we were well again. We were also given a trial of NDT initially.
Unexplained weight gain is the most common symptom plus many more.
Others will comment on your blood tests but no doctor should ever reduce levothyroxine only upon the blood test result of the TSH. It is so wrong and the patient can suffer more. Your last TSH is fine but it looks as it GP is going to try and get you somewhere within 'the range'. Wrong.
Doctors appear unaware that if we aren't on sufficient we can develop more serious illnesses because they haven't been trained as medical students about the thyroid gland and it's function in the body.
Thank you for your help, I was seriously considering changing my doctor, I think I definitely will now. Thanks for the information on the adrenal glands, I will ask her to test me, whether I have any luck is another thing. I found the information on before the blood tests fascinating, what happened? Why did all go so wrong with the blood tests coming in? I'll post tomorrow evening after the doctors, hopefully I'll have better news. Thank you again
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