Guidance needed with GP

[JaxH]

Hi Apologies in advance for the long rant! Getting very frustrated with my treatment, I was diagnosed with hypothyroidism in March started on 100mcg Levothyroxine and told in April that dose was enough and to get retested in a year. Didn't feel any better so in August paid for a private test which showed TSH 6.56 (0.27 - 4.2). After handing this in to GP (couldn't get an appointment for weeks) after a telephone call he reluctantly increased the dose to 125mcg but stated not to retest for 3 months. I did ask about autoimmune but it wasn’t acknowledged. Still feeling unwell but seemed to be showing symptoms of over active without major weight loss spoke to GP again (not the same one and again telephone call - no appointments). Got laughed at as it is very unlikely to happen and just go with your retest date. So I paid for another private test to check vitamin levels and antibodies as after a few days the tiredness and pains started again. The results show that I have Hashimoto’s plus vitamin deficiencies (see attached photo). Thought I would attach a letter to my GP with the results (trying to get an appointment is a Joke) I asked if he would prescribed and monitor the vitamin supplements as suggested by the private results and if there was anything I could do to help with the autoimmune issue as this is now the 3rd autoimmune disease. The response was basically nothing can stop autoimmune diseases and also if I make an appointment and bring the letter with the consultants suggestions for dosage then he may prescribed these but as it's his clinical responsibility he needs the notes first. I will make an appointment but getting frustrated at the lack of knowledge and surely the results should speak for themselves. I can buy the vitamin supplements but more interested in the monitoring as I don't have money to spare for constant private blood tests! Sorry for the rant and any advice or papers I can refer my GP to would be appreciated

[MacG]

Hi JaxH,

There are others on this forum who will be able to advise in a lot more detail but, just speaking from personal experience, I know that I felt "rough" last summer and annual thyroid function tests were showing that things were pretty optimal (similar to yours in fact). So, my GP ordered the other tests B12/ Ferritin, Folate etc. and my folate came back below range - this despite an excellent diet! I started to supplement with a good quality product and it has really helped. Also, I think if your Vit D is low, once again, you can feel washed out/rough (speaking from past experience!). I now supplement with 5000iu D3 daily (but then I have also have osteoporosis, so need to keep these topped up). Just a quick word to the wise re. NHS prescribing supplements. My sister recently received a letter from her surgery advising her that they were going to stop prescribing her D3 (she has osteopenia). I think this is all part of a larger cost cutting exercise. I am sure you are aware of the recent NHS consultation whereby they are looking to stop prescribing items which can be easily bought over the counter. Although the results of this consultation have not yet been released, we all know that in all sorts of ways treatments are already being withdrawn.

Re. your high antibodies. I wonder if you have tried cutting out gluten/experimenting with diet? I just downloaded this article on western diet/autoimmunity in the last could of days. Haven't had chance to read it in detail yet, but it looks interesting.

ncbi.nlm.nih.gov/pmc/articl...

I have also ordered Sarah Myhill's recent book on paleo/ketogenic diet from the library as, like you, my CRP is high. This is something I am keen to deal with.

These are just a few thoughts based on personal experience,

Hope you get sorted.

[Rmichelle in reply to MacG]

Hi somebody else will be along soon and probably say how irresponsible your gp is( its not uncommon for gps to be rude and lack knowledge) but i have 2 auto immune diseases Hashimotis and celiac, you cant ever cure them but you can help erase some to the symptons and as Macg has stated going gluten free will help lower the antibodies of in hashis, i have to be gluten free as im celiac.

Some doctors just make it so impossible to get better and god knows its a long enough fight to try and feel good.

More experienced users will be along shortly to help. Take care.😊😊

[JaxH in reply to MacG]

Hi Thanks for this, I've just recently cut out gluten so will take a while before I notice a difference. Happy to buy the vitamins but just wanted confirmation that they would monitor via blood tests but thought it was strange that GP wanted the recommendations when he could see the results himself. Just very frustrated that NHS is very narrow minded and looks at prescription medication as a short term fix rather than the bigger picture

[Rmichelle in reply to JaxH]

Hang on in there, yes its very frustrating we have all been there, sorry cant help much further but others will reply. X

[Cooper27]

Someone shared this link with me to help calculate how much vitamin D you need, so I thought I'd pass it on:

138.68.12.120/?post_project...

See what your GP says first, but if you find your doctor is unwilling to monitor you, you can get a test with these guys for £24 (use code "25OFF" to save £25 on your first kit):

thriva.co/products/baseline

I'm not sure how they compare to other places, but it's better than nothing. It's a quarterly subscription service, but if you cancel after the first box, you might find they send you a 50% off voucher to entice you to resubscribe for your next kit.

I hope you GP helps, although I hear there is a national shortage of vitamin D in pharmacies at the moment (either the cause of or a result of doctors not prescribing it).

[humanbean in reply to Cooper27]

The link to the vitamin D calculator is very helpful, but it does the calculations using results in ng/mL. People in the UK and many other countries measure vitamin D in nmol/L.

So, if someone has a result in nmol/L they should first convert their result into ng/mL, then use the link to the Vitamin D calculator to calculate the appropriate dose of supplement required.

The OP (JaxH) has a level of 13.3 nmol/L.

Go to this link to do the conversion into ng/mL.

138.68.12.120/?post_project...

13.3 nmol/L = 5.3 ng/mL

Using this link :

138.68.12.120/?post_project...

enter current weight in pounds, let's say it's 140 lbs,

enter current serum level = 5 ng/mL (The calculator insists on whole numbers only)

and leave desired serum level at 40 ng/mL

then press Calculate.

The calculator suggests a dose of between 5000 iU and 7000 iU per day.

[shaws Administrator]

Welcome to our forum and we understand your frustration.

Most on this forum have not recovered our health with the NHS particularly as we may not get well on levothyroxine alone.

Few doctors know anything about treating hypothyroid patients or those with Autoimmune Thyroid Disease (the commonest form of hypo due to having thyroid antibodies) other than taking a TSH and T4 test.

Many members source their own thyroid hormones and self-medicate with either NDT (natural dessicated thyrid hormones) or T3.

T3 used to be prescribed along with T4 if patient was still suffering, but they have withdrawn it in the last couple of months as it became too expensive.

When you have a blood test for thyroid hormones it has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of hormones and the test and take afterwards. This helps keep the TSH at its highest as doctors only seem to take notice of the TSH and T4 and never test Free T4 and Free T3 which reveal more.

Levothyroxine is a prohormone (inactive) and has to convert to T3 (the only Active hormone required in all of our receptor cells) so if we don't have an optimum of levo to convert to sufficient T3, we wont feel very well.