Advice on self-medication

[nums91]

Hello all,

I'm new here and seeking some help/advice on self-treatment.

I have been suffering with 'subclinical hypothyroidism' for almost 5 years now, with TSH levels in the range of 4 - 9, yet no help at all from my GP. I am completely and utterly exhausted, can't work or think, with headaches, weak muscles and aching joints - just completely lifeless, and getting very low moods as a result.

I've told the GP this but I get the same response every time - these thyroid levels cannot be causing your symptoms! I have even seen an endocrinologist privately who gave me the same answer, and have been fobbed off with 'chronic fatigue syndrome'. However, I strongly believe that my thyroid levels could be to blame, and there is plenty of evidence out there in support of that.

I am now desperate, have given up hope of ever getting help from the doctors, and am seeking help as to how to start treating myself. I would like to trial myself on thyroxine for 3 months to see if I feel any better but have no idea how to go about this, or if it is even possible.

Thank you in advance for any help you can offer!!

[SeasideSusie Remembering]

nums91 Have you got full thyroid test results and not just TSH to share? If you can ask for a print out of your latest results then members can offer suggestions. Ideally the results needed are

TSH

FT4

FT3

Plus thyroid antibodies TPO and TG.

Also very useful, because a lot of us are deficient, vitamin and mineral test results

Vit D

B12

Folate

Ferritin

Seeing results from all these tests give a good basis for advice.

If you haven't had them all done you could ask your GP but you're unlikely to get FT3 nor TG antibodies done on the NHS. We can tell you where to get them done privately with a home fingerprick blood test if you need to go down that route.

[Mary-intussuception]

Ask GP for urgent blood tests for

Vitamin D, B12, Ferritin and Folate.

Muscle weakness and bone pain are symptoms of Vitamin D deficiency.

I only got these tests by asking and 3 are low - one below range. My B12 is OK middle range.

Have you any throat or neck problems? Lumpiness, pain, tenderness, swallowing problems, soreness?

Ask your GP for an Ultrasound scan of your Thyroid.

Did you ask GP or private Endocrinologist to test for Thyroid Antibodies blood tests?

Can you get ALL your blood tests results - all numbers and 'normal' ranges in brackets and post here.

Keep pestering GP. Keep going back.

🐥

[greygoose]

Your doctors are talking rubbish. I'd like to see them with a TSH of 2! They'd soon change their minds!

[magsyh]

I can feel your pain. Im in the same boat as urself. I have been ill for years and the last 4 years especially have been hell. I too have been fobbed off by gp's, endo's and private docs and have got no help despite my tsh being on the high side and t4 and t3 being low. I am so fed up of being ill, in pain, fat and tired! I too have decided to go it alone but not a decission to be taken lightly. You must make sure you know what you are doing and take no risks with your health. Firstly you need a private blood test. I use blue horizon thyroid 11. Order one of these tests and when you get results put them on a post here and you will get plenty help with them. Once u can look at results and results of ferritin, b12, vit d, folate and antibodies you can then think about 1st what is causing your thyroid problem? Is it hashimotos? If so its more straight forward and u have to get the antibodies undercontrol by diet, selenium etc. If like me u have no antibodies is it genetic? Lots of hypo in my family and PA. Then what about your vitamin and minerals they have to be in order. That can take some time before that happens and a few blood tests for retesting. Are you menopausal? Lack of progesterone and high estrogen can mess with your thyroid levels big time. Another consideration is your diet, are you eating enough protein? Are you iodine defficient? I was because I dont eat seafood. Your thyroid needs amino acid tyrosine and iodine to make t4 and selenium to convert it to ft3 which is the most important level to look at and your doc wont even test for it. There are so many things that cause thyroid problems, I could go on listing them and the awful thing is that when you go to the doc and tell him how bad you feel they wont discuss any of this stuff with you. They will either dissmiss you or throw you a packet of levo when your tsh finally hits the magic number 10 and you feel half dead. So what ever you do dont go buy yourself a packet of pills and hope for best its not that simple. Baby steps and research and the help of the lovely people on here that know what they are talking about is what i advise. There is no quick fix and its best to ask why you have this problem and not just throw a packet of pills at it coz its for life. Its taken me 4 years to understand this much and i have been down all avenues. Ive finally gotmyself a good supply of levo but believe me the pills have been the very last resort. I now have to start a new learning curve finding whats right for me. So please start at the begining and get the blood test and take it from there xx

[nums91]

Thank you for all your help. It's good to know I'm not alone!! With regards to my blood test results, here's what I have from a recent test:

TSH: 5.1 (0.27 - 4.2)

Free T4: 15 (12 - 22)

Negative for TPO antibodies.

Vitamin D and folate normal.

I also have a slightly low white blood cell count, not sure if that is related to the hypothyroidism - have been told it's normal for people of my age! (F, 26). I don't know my T3 levels, or B12.

I guess I should get a private blood test done and then go from there. It's ridiculous that we have to do this ourselves!

[Marz in reply to nums91]

nums91 What were the results for the so called normal VitD and Folate ? Your TSH is over range - indicating Hypothyroidism.

thyroiduk.org.uk/tuk/testin...

Several companies to choose from

[cwill]

Yep those of us that are being ignored need to self treat after studying all the options. See my profile as I was diagnosed CFS but was clearly subclinical hypo with hashis and they choose not to treat that resulted in 9 years of severe ill health and benefits hassle. I am only just coming out of the nightmare as I am self medicating. Forget all the trust you had in healthcare and read/ study until you feel confident to source your own drugs. I shouldn't have waited for so long but was very very ill and had no one to do the work for me- I had to get my brain working to do it myself. Sounds scary but years of ill health and not being able to work is far far worse.

[tiredofthyroid]

Me too -over the last five years I have developed more and more increasingly bothersome symptoms all of which are a classic tick list for hypothyroid. It's gotten to a point where I am so exhausted I cannot perform in my job, I can't cope with any even mild exercise which has a knock on effect with mood, weight, morale and overall wellbeing. Now stuck in a vicious circle with a new GP who I thought at first just wanted to be thorough, but actually , after 4 blood tests and numerous consultations over the last 4 months, I actually think she's trying her hardest to rule it out and delay any form of therapeutic trial. She treats the blood results, not the person sitting in front of her with three sides of A4 listing out all the problems I have. She acknowledges that all my tests show I am sub - clinical hypo and have been for some years (hovered around 3.5-4.2), with the odd 'transient' abnormally low result (5.95 - probably dependant on what time of the day etc I have the tests) but just will not treat it. Meanwhile, she's also tested my FSH (to see if it could be menopause). I've just turned 45 years old, my FSH is 22, just slightly higher than 'normal' >21, but less than menopausal > 30 and without a second thought she wants to put me on HRT!!!??? Surely that FSH is 'normal' for a woman of 45 years old who is probably approaching perimenopause. Why so eager to treat that but not the classic worsening thyroid symptoms I've been suffering for 5 years? Yes I understand there are many cross over symptom with the two conditions, but as far as I know brittle ridged, flaking nails, extreme intolerance to the cold (and I've lived in Barcelona and Cambodia for most of the last 5 years where I really shouldn't be feeling cold the way I do), constant fatigue, depression, anxiety, chromic constipation, dry hair, hair loss (inc eyebrows), dry skin ( I have to use body oil, lotion just doesn't do it) tremor, joint pain, muscle weakness and constant aching, weight gain, dizziness, brain fog, memory problems, confusion and so on and so on are not ALL also menopausal symptoms. Anyway, after reading a tonne of clinical research, forums, thyroid charity info, I've decided to self medicate with Levothyroxine 50mg/day, just to run my own trial and see how I get on for a few months. I've worked in the pharmaceutical industry for 25 years, I understand the risks vs benefits and what to observe and look out for - why she can't support me in this trial is beyond me. Of course if it doesn't do anything, which I doubt, I'll stop taking it. I've also asked her to specifically look further into the chronic constipation which has been a sudden and constant change for me in the last 14 months. I reported this to her in April, because everything you read says you should report change of bowel movements to your doctor if they persist, especially at my age. And she hasn't done anything about that either, even when I have suggested I bring in a stool sample to test, she hasn't acted on it. Surely that is just reckless and it's the stuff nightmare stories of undiagnosed serious problems are made of. I'm not neurotic, and I'm pretty certain the constipation is down to thyroid, but why on earth would you not run a simple stool sample? The frustration just adds to the whole burden of all the symptoms I'm limping along with. What is it with the UK and the reluctance to treat Thyroid. As I have said, I've lived abroad and when I speak to people of other nationalities, they just can't believe it. Elsewhere, if you're highly symptomatic and have levels of 3 or under, they would initiate treatment. Yes there are risks associated of thyroxine pushing you into the hyperthyroid space (Osteoporosis), but there are also very real risks associated with not treating persistent and worsening subclinical thyroid too (Cardiovascular) Plus, how strong are my bones going to continue to be if I'm not exercises and using them, which I currently have no energy and too much joint and muscle pain to do. This coming from someone who has loved and done sport all her life and the lack of it now further negatively impacts of my lifestyle. I appreciate this has just turned into a rant - apologies. But yes, I'm encouraged by reading so many similar stories and welcome any pointers from people who have already been through all of this and are ahead of me in their overall experience of living with and self treating hypothyroidism. By the way, I am based in Bristol currently. If anyone out there is also local, and fancies meeting for a chat over a coffee or gentle stroll, do let me know. I'm fairly new to this area so don't have many friends or family nearby and it would be good to be able to have a friendly chat with someone who understands. Best of luck to you all