Hi there, I'm new to this forum and would really appreciate some advice. I'm 33, female, average size and for a while have suffered with bouts of very painful hips and knees, crippling fatigue, heavy painful periods, hypersensitivity to cold, including numbness/cramps in my feet, and occasional low blood pressure. A few months ago I was diagnosed with hypothyroidism (as well as a relatively minor case of a blood disorder called polycythaemia which affects my circulation and joints, which in turn exacerbates the thyroid symptoms) but my doctor said he wanted me to take a course of vitamin D for six weeks before deciding on what dosage of medication to give me.
Fast forward to my last blood results following this and my TSH levels were nearly back to normal so he said he can't give me any medication without risking my thyroid becoming overactive. I did feel a little better at the time - which I think was a combination of the vit D, the summer weather and generally feeling better mentally due to lockdown easing and the relief of being taken seriously by my doctor and getting a diagnosis. However, over the last month the original symptoms have come back with a vengeance (the incoming cold weather no doubt being no coincidence) and I don't know what to do. I've continued taking vit D as well as omega 3 fish oil capsules as I've heard that's good for joint pain but I was wondering if anyone with similar experience has any recommendations? I can't take turmeric or iron due to the blood issue but I'd be willing to try anything for the leg pain as sometimes it's so bad I can't sleep and can't stand for for more than a couple of minutes.
Also, do you think it's worth making another doctor's appointment (bearing in mind it's difficult to see them and get blood tests for under 40s at the moment) or should I wait until my next scheduled blood test and check up in about three months' time?
Apologies for the LONG post but the pain and fatigue is really getting me down and starting to affect my day-to-day life and I'd be grateful for any suggestions.
Thank you!
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rustymoon88
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appologies , just realised my mistake . now i've read your post again more carefully i see you haven't been started on Levo yet . which makes my previous reply irrelevant . sorry .. have put my specs on now. (i thought i'd read "wouldn't give me any MORE medication"
Just want to clarify. There was signs of an under active thyroid but doctors says has now improved & you are not currently taking any replacement hormone?
When a doctor says levels are “ok, fine or normal” it usually means it’s in range, even if only just in range. It doesn’t mean optimal & it doesn’t show what normal or ideal for you.
This might apply to vitamin D where NHS prescribe when severely deficient. You will likely be needing higher doses to maintain an optimal level.
First step see what tests have actually been tested and what the results are.
For thyroid testing sometimes doctors go by (TSH) Thyroid stimulating hormone, a hormone from the pituitary which increases when thyroid levels are low. (it’s telling the thyroid to increase production)
You need to know what your actual thyroid hormones are. The FT4 (the free thyroxine) and FT3 (the free triiodothyronine) go very low if thyroid struggling.
Does your practice offer online access? Very useful if available, if not obtain printouts of your results via reception (don’t ask doctor) & don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist providing just say they are “for your records”. You are legally entitled to them.
Thanks for your reply. Yes, my first blood test showed that my TSH levels were high (my surgery isn't currently letting patients use the online system so I can't view the exact results at the moment) but the results six weeks later after taking a course of vit D showed that they were almost back to 'normal', hence why the doctor wouldn't prescribe me any medication and just said to book another blood test in six months' time. He said I was only slightly vit D deficient so I don't think this is the issue given that I've continued taking 1000 iU per day since.
He didn't mention FT4/FT3 so I'm thinking my best bet would probably be to try and get hold of my exact results and then go back and ask them to check my FT4/FT3 levels.
Doctors usually repeat when high TSH levels show up to see if they remain high. This is usually within a few months but some doctors seem happy to stretch it out longer.
“my surgery isn't currently letting patients use the online system”
Was is available & since been taken away or it the system saying “not available”.
Initially you are given a basic access, you have to set up an “enhanced access”. If it says “not yet available” it might just need to be upgraded. It would be clearer to say “not yet requested”. What system are you using?
EG For TPP systmonline. Sometimes you can set up by going to Account > manage online services > the add full clinical record, it tells you “If you are requesting access to your full medical record, we have one calendar month to ensure it is processed correctly to new GDPR guidelines. Please be aware that your full medical record will also contain your detailed coded record already”
Or you can contact practice and request full access including historic records, they may have form & should request ID unless they “know” of you.
England are contractually mandated to supply access other areas vary.
In meantime ask reception obtain printout of exact results & put on new post.
“slightly vit D deficient” by NHS standards means you are very far from optimal.
Continuing to take 1000 iu per day may or may not be sufficient maintenance level. Many over the counter preparation are very much higher.
There are 2 important cofactors for vitamin D, K2(MK7) which directs calcium to your bones and teeth where you want it and away from blood vessels where you don't want it. Magnesium another important co factor there’s a lot of posts about it on here & which type is best.
I think, only think, that if we overdose on vitamin D the symptoms of being deficient return, and wondered, since D is oil based therefore builds up in the body, if this might be a contributing factor?
I didn't know that - interesting! My doctor said I was slightly vit D deficient and I only take 1000 iU per day but I will definitely mention that in future appointments, thank you.
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