Really hoping someone can help. I’ve been having difficult recently with joint pain, sleeping badly, irregular menstruation, headaches, trouble retaining information and miss hearing. Fluctuating temp. My balance is also rubbish and I’m clumsy. Moody. Lethargic.
The G.P ordered some tests. And they found that my TSH level was 4.3 mu/L (ref range 0.27-4.2), free T4 was 12.7pmol/L (ref 12.0 - 22.0). My red blood cell count was just outside the reference range and so was my ESR was 31mm/h (ref range 1.0 - 12.0). I was also slightly low in vitamin D at 32.1nmol/L.
My symptoms don’t seem to be getting any better. They prescribed me 25,000 units/1ML invita D3 solution to be taken once monthly for the vitamin D. And naproxen 500mg twice a day for the joint aches.
The G.P said it can’t be the thyroid causing all of my symptoms as it’s only 0.1 out of range and it has to be something else.
G.P has referred me to Rhumatology. Are they going to be able to do anything? I literally just want to feel better.
Any advice is really appreciated. They won’t retest TSH for three months. Can’t go on for three months.
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If you lived in another country you'd be diagnosed if TSH goes above 3 with symptoms.
In the UK, they know no clinical symptoms at all and only look at the result on a piece of paper and ignore symptoms some which are quite disabling to say the least.
You can source your own levothyoxine (I am not medcally qualified but had undiagnosed hypo - which I finally diagnosed by myself when TSH was 100). To do so put up a fresh post asking for private messages to be sent to you. The starting dose is 50mcg with 25mcg increases every six weeks until your symptoms are relieved. You may want to get frequent blood tests before an increase.
I shall give you a list of clinical symptoms and a couple of other links which will prove you have hypothyroidism. If you have thyroid antibodies it would mean you have the commonest form of hypo because antibodies mean you have an Autoimmune Thyroid Disease commonly called hashimoto's but treatment is the same.
If you wish you can have a Full Thyroid Function Test, TSH, T4 T3, Free T4, Free T3 and thyrid antibodies - they are home pin-prick tests.
GP should test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.
Once upon a time - before levo and blood tests were introduced - we were given NDT (natural dessicated thyroid hormones) which were gradually increased until we were symptom-free.
I see that shaws (experienced member) has replied to you before I finished my reply.
Your GP is an idiot. It’s your thyroid causing this.
For us to feel well our TSH should be 1 or below and T3 & T4 in the high figures of the ranges. I see that T3 wasn’t tested. This is the active hormone that makes us feel well. If you speak to any GP or Endocrinologist (most) they don’t think it’s important.
Until your TSH reaches 10 you will find that the NHS will not treat you on thyroid medication (Levothyroxine) unless you find a sympathetic GP, but they go by NHS guidelines.
I even saw an Endocrinologist who left me to get worse until my TSH was 12.2 then my GP stepped in and I started on Levothyroxine.
Unfortunately, I can’t get on with Levothyroxine, despite changing brands etc, but, you may be different.
As Shaws has suggested perhaps get private blood test to see if you have antibodies present.
If you do try going gluten free, it may help with inflammation, and your brain fog.
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Essential to test thyroid antibodies
Low vitamin levels as result of being hypothyroid are extremely common. You already have low vitamin D
Your TSH is high and FT4 right at bottom of range.
Low B12/folate can cause dizziness or clumsiness
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or 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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
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 .
Vitamin D needs improving to around 100nmol. Essential to retest once you finish loading doses. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Trial and error what dose each person needs
It depends how good your GP is, normally they ignore them if not authorised by the NHS, they don’t like patients questioning them perhaps?
However, I personally think it’s a good idea to see whats going on if the NHS will not test you further and you can help yourself improve.
I see that your T3 hasn’t been tested and you haven’t been tested to see if you have antibodies present (autoimmune disease). Your iron levels haven’t been tested either.
If your GP will not do this, then it’s a must as you can help yourself (If positive results for autoimmune disease) by going gluten free, this helps inflammation in the body and helped my brain fog.
You have been given information on what companies provide the blood tests so you have lots to read up on.
Completely agree with others that your thyroid is an issue, but in addition your Vitamin D is a huge issue. You need it to be right at the top of the range, and possibly over the NHS range. This will be causing you symptoms at the moment.
You've been prescribed a very low dose, that comes to less than 1,000 international units per day. You can take 6000 per day for a few months to get your levels up, then drop back to 2000 or 3000 to keep it topped up. The Vitamin D Council is the best place to look for guidance. You can buy this over the counter (preferably online) easily, its one of the easiest to supplement.
An alternative is to go w your GPs suggestion and demand to be retested once the course is up, and ask for another if it's still low. Although the easiest thing is to just buy your own at that point.
Hello i’ve Been here my Vit D was 30 I had all the symptoms you have and believe me I thought I was dying they did’nt put me on a loading dose to start off with as they checked me for everything to make sure it was the vit D, once it started to get into my system I started to feel better aches and joint pains I could hardly walk started to go I call it my sunshine meds i’ve been on it now for 8yrs I take 1200/1600ui per day and that keeps me on an even keel..has your doc checked you for folate B12 and ferritin best to get those checked too,,good luck.
Hi there thank you very much for your reply. My GP didn’t but I ordered my own tests and I can’t add a picture of them but my folate was 2.07 (range 2.9 to 50) and my b12 was 73 (25 to 165) and TSH is.” Now 5.46 (0.27/4.2)
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