I was diagnosed with hypothyroidism at 13 & once commenced on the right dosage of Levo I had virtually no symptoms up until 2 years ago at 21.
I used to exercise/run everyday which was a god send for dealing with stress and I was a slim size 8.
My gp then decided I was SLIGHTLY overmedicated and decided to decrease my Levo by 50mcg.
Within just a week or so i felt awful, my energy was gradually sapped, my mood became erratic/often tearful. My bloods were retested and surprise surprise I was now on TOO LOW a dose.
Fast forward 2 years and my GP is still struggling to medicate my thyroid correctly I have blood tests/dosage adjustments every couple of months. It constantly swings between hypo/hyper. I religiously take my medication first thing in the morning with something acidic as recommended.
I have put on nearly 3 stone and am now classed as obese for my height (5.2) and just over 12 stone despite following a healthy diet. Admittedly, I no longer exercise as much as I want too as my body does not allow me.
The joint pain is debilitating as is how fatigued/ short of breath I get. I can barely pull myself out of bed for work never mind go to the gym. When I do force myself to go I feel faint and experience palpitations
This in turn has had a negative impact on my mental health as I feel down constantly, I can no longer do what I enjoy (running) and also it sounds shallow but the fact I'm now overweight is a massive confidence knock for me and I detest looking at myself in the mirror.
This has also affected my work. I work long shifts and nights as a nurse in an itu. I used to love my job. Now i feel I dread every shift. I'm plagued constantly by difficulties concentrating or sleeping properly between shifts. My patients are the most important thing to me, and I work hard to ensure they have the best care I can give them; even if this means working when I feel down and/or dizzy/nauseated.
My employer I'm sure just thinks I'm miserable or staging it when I'm forced to go home sick due to recurrent nausea and dizziness.
Even though the last time I was off sick was over 10 months ago, with the same thyroid related symptoms, I am now on a formal sickness warning?! I'm doing all I can to not feel this way. I'm back and forth to my gp who have declined to refer me to an endocrinologist although they are clearly struggling to manage my thyroid issues.
What else do they want me to to?
I don't want this condition to stop me doing the job I love. My fiancee bless him is so supportive but no one can possibly understand how this feels unless you've dealt with it yourself.
And as many of you probably feel...I just want to feel my "normal" self again.
Feeling at a loss.
Rant over.
Written by
Rw146
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Hopeless GP. If it’s not broke don’t fix it. It can’t be adjusted by TSH, dose must be adjusted according to how you feel. If GP won’t do that then you have to do it yourself. 50mcg is a massive reduction.
If you know what dose you were on when you were well I’d suggest increasing in 25mcg amounts until back on that dose. Then leave well alone for at least six months. Then it might be helpful to get fT3 tested and you probably would need to do this privately.
I’m not medically qualified of course, but I have over 25 years experience of battling with GPs over thyroid dose. I’m well and have lived my life mainly as I would have wished despite the thyroid problem which has caused some lengthy absences from work at times when I’ve allowed medics to adjust dose. Good luck
I feel for you. Have you got a number of thyroid and vit/ min results to share...sounds like your dr. may be treating you by your TSH level? Have you thyroid autoimmune antibodies ( TPO or TgAb) or Hashimoto’s?
Your basic problem is that your doctor is probably diagnosing you by a TSH value only and trying to maintain your TSH in the normal range. This is probably why you were diagnosed as slightly overtreated those years ago. It was and is a totally wrong way to diagnose and control the treatment of patients on T4. Also dropping T4 by 50ug was irresponsble - it is too drastic a change. As of now, do you think your doctor is still diagnosing you this way, instead of looking at you and trying to recover health, whatever the dose of T4 needed and disregarding TSH completely. Biochemical testing has only a limited value compared with getting the patient well again. TSH is no good, except if you are not taking the pills. FT4 is no good because you can often have an over-the-top value in good health on therapy. The only reliable test is FT3 which I am sure you have never been tested for. What is your T4 dose now? The top dose is usually 150 ug T4. There is a formula for adequate dosage (1.6-1.9 ug T4 per kg weight). Your weight is about 77 kg. Therefore your T4 dose should be anywhere between 125 and 150 ug depending on how you respond. We shouldn't look yet a possible faults in T4-T3 conversion until you have an FT3 done, and the ratio of FT4/FT3 wroked out to estimate conversion efficiency.
"I religiously take my medication first thing in the morning with something acidic as recommended."
There has been some research that showed where there were malabsorption issues, dosing levothyroxine with hydrochloric acid may improve its absorption, and subsequently further studies have showed some improvement co-dosing with Vit C. I haven't seen anything myself though, that indicates co-dosing with vit C in the absence of absorption problems further improves absorption and hormone levels. But just to clarify, what "something acidic" do you take with your Levo?
Your GP was incorrect to reduce dose by such a massive amount
Probably didn't need reduction at all
Once levels are reduced, vitamin levels crash and it's difficult to get balance back
Just testing TSH is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised of if been under treated
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If 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.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
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