First time posting

[CS1964]

I had been feeling anxious/depressed with muscle and physical fatigue for years. GP doubted I was depressed In May 2017 she took bloods and diagnosed auto immune hypothyroidism ? with a TSH of 10.8 (0.27 - 4.2) on 50mc Levothyroxine ...I have tried to get wise on the subject of hypo following posts here....but the closer I think I understand, I have no clue. I still felt ill in July and bloods revealed a TSH 6.13 and Free Thyroxine 15 (12-22)/upped to 75mc levo. Endoscopy/ biopsies revealed significant Ceoliac and I’ve been gluten free since. I have had sore joints in fingers for a while and carpal tunnel..GP said this was typical and also diagnosed peripheral Neuropothy and lichen schlerosis..saying auto immune conditions hunt in packs. I asked for bloods taken in December as my joints fingers toes are agony. They however only tested TSH now 1.32.. and first time tested B12 440 (191-663) and folate >20.0 (191-663)....although gastrointerologist prescribed folic acid in July so folate is improved? ...In May last year I had lost 6 kilos and I’ve now gained 12 kilos and climbing daily.

I have blurred vision, still depressed and anxious, often breathless and heart palpitations.. my hands are always freezing and fingers tingling and have trigger finger ...

GP says to stay on 75mc levo and that I am now well and to keep going with GF diet. I was asked why I wanted the results of results. I said to share on this forum, I got them for £1 each. I dont think they have much detail compared to the results posted here... if the G.P says I’m well why am I continuing to gain weight, why don’t I feel well.. does a TSH of 1.32 mean I am now no longer hypothyroid?...sorry about the amount of info..

[Scazzoh]

Hi CS, you are patently not well, so your G.P. is completely insensitive to say you are. What he means is you LOOK well on paper - a very different thing. Your TSH is still too high. It needs to be below 1, so you are undermedicated and need an increase. Your B12 and folate are low and there are other people on this Forum who will give you good information about how to address that.

Have you ever had your thyroid antibodies tested? You may have Hashimoto's which is the most common form of underactive thyroid disease, whereby your body produces antibodies which attack the thyroid and flood the system with thyroid hormones which can cause symptoms of anxiety, among others. The paleo Autoimmune Protocol (AIP) is a lifestyle programme aimed at reducing inflammation, healing digestion and delivering nutrition that supports health and ultimately reverse autoimmune disease. If you want to find out more there is a good book called A Simple guide to the Paleo Autoimmune Protocol by Eileen Laird. There are also some very good websites, including The Paleo Mom, Autoimmune Wellness and Phoenix Helix. The AIP can be a very powerful healing tool and there is lots of good science behind it.

[CS1964 in reply to Scazzoh]

Thanks Scazzoh. I will look at the websites you have given me. I had a look at my results and the only thing I recognise of what’s been posted on this forum was the Free thyroxine, B12 and folate...so no I’ve never had antibodies tested. Fruitandnutcase has advised about Blue Horizon so I’m going to give that a try too..

[Fruitandnutcase]

HiCS1964, I started off thinking that your GP seemed to be quite helpful as he seemed to have tested quite a lot for you and said that autoimmune conditions Hunt in packs - I’ll second that! Then I got to the end of your post where he says that ‘you are well’ when it’s patently obvious that you’re not really.

Have a look through the TUK website for helpful information thyroiduk.org.uk

I’ve got Graves Disease and have successfully reduced my thyroid antibodies by going totally gluten free. I joined Coeliac UK and got their free handbook of every gluten free food known to man ( or it seems like that)

You are entitled to have your blood test results. My surgery print them off free and have never asked why. When I asked my endo at my first visit he wrote them down for me along with the lab ranges, no questions asked. I always kept a notebook where I wrote down all my blood test results and any symptoms - just bullet points really - too much and you loose your endo’s attention I would imagine, I also jotted down how I felt on each amount of levothyroxine - my treatment for Graves was quite different to yours but it would be worth you doing something similar - and also I write down any questions I wanted to ask when I saw my endo. Being hyper I never saw my GP once I was referred to an endo.

I was never able to have my T3 tested on the NHS - or vitamin D although I managed to have B12 done, I now use Blue Horizons home finger prick Thyroid 11 tests which made my life easier by not having to beg.

Good luck with it all, you have discovered a good place for support and to find out everything you need to know about thyroid problems.

[CS1964 in reply to Fruitandnutcase]

Hi Fruitandnutcase....thanks for your advice. I feel like I’m going mad and yes I thought initially she was being helpful, but she was really disinterested and I think she was surprised each time she went fishing and pulled out another auto immune condition. I have had to request blood tests...and had to call up to discuss results...I now see a gynaecologist for lichen sclerosis, a Gastro for Coeliacs...I’m on amitryptilene for nerve and joint pain... and had to request my last bloods as I feel tired and sore....when I called to ask about results.... the receptionist told me they were filed and needed no further action. I had an appt with dietician for Coeliacs who called my surgery to make sure I had flu shot and pneumonia shot... But not a dickie bird from G.P. I will take your advice and contact Blue Horizon....

[shaws]

I shall give you a list of clinical symptoms of hypothyroidism.

thyroiduk.org.uk/tuk/about_...

If you have any of these symptoms, a proper, adequate dose of levothyroxine or sometimes the addition of T3 (which they wont now prescribe) alleviates pain.

Also if hypothyroid our stomach can be affected due to having low stomach acid and it is required to dissolve the food in our stomach. Due to the symptoms of low acid or high acid being practically similar the doctors prescribe for 'high acid' when we may be low. Most of us take digestive enzymes with meals to enable food to be digested properly.

You need a Free T4 and Free T3 blood test, next time you have one but your doctor is now convinced you're fine as your TSH is low. They forget altogether that we need T3 to drive our metabolism and T4 has to convert to T3. That's why it is important that we know if FT4 and FT3 are optimum (ie towards the top of the range).

beyondceliac.org/research-n...

If you go to the date September 24, 2002 on the following link to read:-

web.archive.org/web/2010122...

We have to research, ask questions to get our health back. That means relief of all clinical symptoms and we feel well.