GreenCardigan , I’ve been struggling with Thyroid and Adrenal issues for over twenty years , mainly relying on natural supplements ,and low dose thyroxine , However since the beginning of this year following an accidental trip and fall things have gone from bad to worse - pins and needle sensations in my head left hand and leg including foot, also muzzy continuous headaches, gritty aching eyes , painful neck and shoulders , and worsening gut issues and hair coming out in handfuls , exceedingly dry skin , etc I could go on ,the list is endless . After checking lots of posts on the forum , I’m feeling optimistic that you lovely caring people will be able to shed some light on all this . I am a 72 year old female ..
Hypothyroidism and Adrenal Issues: GreenCardigan... - Thyroid UK
Hypothyroidism and Adrenal Issues
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Any advice would be greatly appreciated
the first thing to know is the thyroid has its own symptomology. but having thyroid issues affects other organs too which then have their own symptomology. take the dry skin and hair loss. thats is a primary thyroid issue. but the pins and needles feeling is secondary,, and related to heart issues. (as is swollen legs an d weight gain)
in my 37 year experience i have found GP's know that heart and adrenal issues can be triggered by thyroid issues and so they just go straight to source and blame your complience of how much thyroid meds you are not taking as the underlying cause. what they dont realise is once its impacted other organs you got to treat the other organ issues as separate things and not keep trying to push it back to thyroid med complience.
the pins and needles feeling is something you really need to get looked at properly because its heart related so very important. the dry skin and hairloss i bet the GP will just cast away as a annoyance side effect and calli an age related thing to just live with. but just keep pushing that you want it noted down and you want to be reffered for further tests as thats not acceptable.
as for the gritty painful eyes. again dont let the doctor treat it as just a thyroid side effect. actually get them to do something and treat it as a separate issue. and i know your eyes are painful and the most noticable symptom. but please also get your heart checked out due to the pins and needles feeling. as that can lead to serious issues longterm if not dealt with.
the only times i had eye issues was my sensativity to swimmingpool chlorine but that was temperary, and also side effects of some heart meds that affected eyes and headaches but the funny thing about thyroid is it can affect everything. so yes its all related. but just dont let the GP talk you into blaming it on thyroid and leave you to just live with it. get them to treat it as a separate issue
Thank you for your kind advice , all I have to do now is to try and persuade this newly appointed GP to the surgery that all these issues need. investigation ,ASAP . I wish I could see another Dr . at the surgery but this is not an option anymore except in cases of emergency ,and as I live in a village there is only the one surgery .
I’m sorry things have been so bad for you this year. It may be that you need more thyroxine. Do you have copies of your latest thyroid blood test results to post on the forum? That will be very helpful so that people can comment.
Welcome to the forum.
Have you ever had full blood testing relevant to thyroid issues? - ie TSH, free T4, free T3, thyroid antibodies, and key nutrients - ferritin, folate, vit D and B12? If not, can you treat yourself and get a private test? You will see LOTS of posts here about private blood testing. There are discounts available on the Thyroid UK site for some tests, and Medichecks usually has a discount on a Thursday. SlowDragon has replied to other posters with a good summary of the tests available and you can do home testing if you can't get blood taken easily locally to you - SeasideSusie gives excellent advice on how to do this. So if this is something you want to do, click on their names and look at their replies to people.
It's shameful how so many of us are treated by our GPs. All too often they do minimal testing (usually just TSH; occasionally free T4) which isn't nearly enough. And some people are kept on an inadequate dose of levo for years while their health declines. I would put money on you being under-medicated, probably because your TSH is "in range" and your GP has never bothered to look at the levels of your actual thyroid hormones.
I'd strongly recommend taking control of your own health. Read the hypo section of the Thyroid UK site; look at helvella 's excellent glossary [look at "pinned posts" to find it].
But in summary, your hypothyroidism was initially picked up because you had high TSH, TSH is a message from the pituitary to make more thyroid hormones, so if your body doesn't make enough, your TSH gets higher and higher to tell your thyroid to do more. But TH isn't itself a thyroid hormone, and sometimes the message it sends out doesn't get picked up properly; and once you take thyroid meds, it becomes much less important anyway because your medication is supplying the hormone you need, so you need to check on your actual thyroid hormones to see how you are doing. Your thyroid makes T4, an inactive thyroid hormone, which converts to T3, the active hormone needed in every cell of your body. So you need to test these levels to see how much thyroid hormone you have and how well the T4 converts to T3.
When you get your blood tested, post the results here, and the lab ranges (which vary from lab to lab) and the lovely people here will help you understand them.
Good luck x
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Welcome to the forum
mainly relying on natural supplements ,and low dose thyroxine ,
can you tell us exactly what dose levothyroxine, is this prescribed by GP?
Do you always get same brand of levothyroxine?
What supplements are you currently taking?
Levothyroxine doesn’t top up a failing thyroid, it replaces it, so it’s important to be taking high enough dose
Taking too little, reduces your own thyroid output, but doesn’t offer enough replacement
Low vitamin levels frequently result from being under medicated
Pins and needles is frequently low B12, very common when hypothyroid and increasingly common as we get older too
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Hi GreenCardigan, sorry you are feeling rubbish, I just wanted to offer some reassurance on top of the other helpful advice you have been given. Pins and needles may not be a heart issue but simply a vitamin and mineral deficiency. B12, iron levels and calcium to name a few can cause your symptoms including the dry skin and hair loss. Annoyingly too high levels can produce similar symptoms as too low levels so it’s tricky to know what you need without checking the levels before taking any supplements, just to be safe. Ask your GP for a few checks, good luck x
Thank you for your advice , My previous GP who was only at the surgery for a very short time did very few tests despite my requests ,However he’s now moved on ,and my hopes that his replacement would be more understanding and helpful have been shattered on my first visit . I’m now looking into having private blood testing . Your comments on B12 are definitely food for thought . B 12 is one test that was agreed by previous GP , the results seem low to me , though say no further action !
Hello and welcome. Hopefully following your fall, your GP tested your B12. If you can, try and get copies of previous results (or get some done, like others have suggested). You don't say how long or what kind of gut issues, but if you are digesting poorly (like many of us - and low stomach acid goes firmly hand in hand with autoimmune conditions and also gets lower as we get older) you will be less able to absorb nutrients from food. B12 is hard to absorb anyway, so tends to be more affected. Have you already changed diet, tried looking for food intolerances, cut out gluten (after coeliac testing) etc ? Best to concentrate on gut health and liver function to improve overall health. Has anyone considered Sjogren's and Small Fibre Neuropathy - might be worth a neurology referral, but some basic bloods first. Please don't supplement B12 (or folate) without proper testing first. Best wishes
Thank you for your kind advice , My GP . did eventually agree to test my B12 levels 6 months after my fall which was then 401 ngL ( Folate =4.3 ug/L ) I will post full results of all tests done at this time , on the forum for all to see. . Have not changed my diet drastically as yet but I’ve been following a low sugar diet for a long time for hypoglycaemia , I’m semi vegetarian , ( do eat fish and organic chicken ) Actually sjogrens syndrome was mentioned by a family member only a week or so ago ! I’m about to look up small fibre neuropathy!
That B12 level would be symptomatic in my family, but some would be ok. It might be worth trying to get or borrow a copy of Datis Kharrazian's 'Why do I still have thyroid symptoms' which has a chapter on blood sugar and how it interacts with thyroid (and adrenal) function. He says you cannot effectively manage a thyroid disorder, be it autoimmune or functional, without resolving/supporting hypoglycemia etc first (along with sorting food intolerances). Best wishes
Sorry to hear you're having thyroid problems and feeling poorly. I haven't got anything very specific to add but just wanted to say that I discovered a couple of years ago that there's at least one brand of thyroxine that definitely doesn't work for me. I didn't' realise that the same dosage from a different manufacturer would not be as effective, but once I worked that out and insisted on only having the brand that works for me, I got back on track again. Might be worth trying a different brand. Secondly, taking Vitamin B complex and B12 supplement makes a noticeable difference. (Wise advice from one of the other respondents though about getting tested, before bulk-buying vitamin tablets! ) I hope you find something that helps to make you feel better soon.
Thank you for your kind words of encouragement , I will certainly ask to try a different brand of thyroxine . I’m having difficulty finding somewhere to have some blood taken for private testing , but the surgery advised that the closest place is over 40 miles away , and I don’t have my own transport right now . I know some tests can be done with a finger prick , but as I need a complete thyroid profile plus vitamins and mineral status , it would I guess need a proper blood draw .
Sounds to me as if you need to see a specialist. Have you contacted your gp.
My GP was useless , and refused to do only the tests he considered necessary , he moved on at the beginning of September , but his replacement whom I met for the fist time a week ago appears likewise in his approach ,so don’t think there’s much chance of being referred to a specialist . Thanks for the advice though ,I will be working on it ,