Had another GP appt this week and just feeling really rubbish about everything again. We focussed mainly on my symptoms of skin crawling and tingling which fluctuate but have progressed to some prickling sensations and numbness. I've also had a few instances where I've had some shaking. I also get dizzy spells which I forgot to mention. She has referred me to a neurologist which is good as it's all being investigated.
I've had two thyroid blood tests, the first showing a just below range T4 and and high in range TSH. This was retested and the second test brought the T4 up one point with the TSH creeping up slightly but still in range. I retested myself privately a month later and T4 was down again and TSH had crept up a bit more (still in range but now only just). As this result didn't change much I didn't tell my GP about the private test as I didn't think it would make any difference and want to keep her on side as she's the best GP I've seen at the practice.
What's frustrating me is that during my last appt, she looked at the tests they had done and actually said "well that's now in range so it can't be your thyroid". She then proceeded to explain how they might not be able to find the cause of my many many symptoms at all.
I just don't understand it. How can being 1pt into "normal" with an increasing TSH combined with a load of symptoms with no other known cause just be ruled out like that. It doesn't make any sense to me.
My plan is to keep monitoring it myself and then approach her again once the TSH goes out of range (Assuming it continues heading in that direction). However just feeling exasperated that I have to do that and know that even then I might have a fight on my hands.
No questions, just feeling a bit depressed about it all.
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MiniMum97
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Hi MiniMum97. Im having a similar problem. My TSH increasing at every blood test and can tick nearly every symptom of hypothyroidism on the thyroiduk symptom list. No GPs listening to me and ignoring my many symptoms or telling me it can't be my thyroid as its in range (they mean below the magic 10). Ive been told its in my head and prescribed anti depressants and also told if I lost weight Id feel better.
Just banging my head against a wall like you it seems. Following advice from the amazing people on this site I have supplemented the nutrients my blood test showed as low and have just started to self medicate with Thyroid s as I have got so frustrated with medical profession and if I wait for them to help me get well I think I may not make it.
Thanks for your reply. Feeling so despondent about it all at the moment. It's good to know it's not just me! Would be very interested to know how you get on with your thyroid meds. V nervous about self-prescribing.
I know it feels like you are alone . Believe me you are not alone. I feel like a hypochondriac as Im always at a doctors or hospital for something. I am so glad this site is here as the lovely people here have saved me from myself. Im sure you will get more replies and proper advice from more expert people than me (Im still learning myself). Ive been really nervous about starting thyroid s and have had them in my cupboard for 6 months. I kept putting it off for various reasons like I had appointments with rheumatology and then gp and ENT and wasn't sure what they were going to test so it gave me an excuse not to take NDT because I was nervous about it. When a blood test done by gp came back at TSH 6.90 I decided to get a blue horizon test done and that too came back as high and recommended thyroid meds. I know my gp won't prescribe as I have asked so many times before so I decided to start off on a really low dose thyroid s of qtr grain and I am building up slowly. Its only my second week and Ive just upped to half grain so maybe a bit early to notice much yet. I have faith that it will help me but if it doesn't then I don't know what I will do as I have no faith in doctors. Hope you get some help soon. Hugs Joolz.x
Thank you so much for your reply. Really hope the thyroid meds help you. Please let me know how you get on! Will follow you so I can see your updates.
I am also always at the doctors and feel like a hypocondriac! I find most doctors very dismissive but at least the one I have found listens and tries to help. Having read what I know on here though doctors seem really misinformed about thyroid conditions. It just makes no sense to continue to believe that you can't have hypothyroid symptoms until your TSH is over 10 when it seems that the evidence of so many people is that symptoms appear way before this point.
Hi, I have just started to go through this process but immediately I can tell my GP is very reluctant as I am just out of the range ( high end ) for TSH and within normal for T4.
I would be interested to know what you are self medicating with and how to obtain it please.
I am not at a point of taking anything yet as I need to learn more about it all but would love to know for future reference.
I feel for you. Is there another doctor at the surgery you can try? If you haven't actually asked for a trial give it a shot and take along the lost of symptoms ticked with the ones that affect you. Tell the doctor that you printed off the list from Thyroid U.K. Site which is often recommended by the NHS. Print out any other info that you feel may help and also point out that you are tending to drop out of the range so may be trying some Levotgyroxine to kept you within the range could well be beneficial and hopefully improve some of your symptoms. In fact write to her and asked he to think about it and that you will make an appointment to see them in a couple of weeks plus you would like this letter to go on your file.
Then go to your local pharmacy and ask if there is a local doctor who prescribes thyroid drugs as your next step might be to change doctors. If that is a positive conversation and the doctor refuses your request then say what you are thinking of doing. I know you may think that is a drastic approach but you need some help.
Thank you for the very helpful and practical advice. Think I will have to go through with the neurologist referral and if that yields nothing will give me more reason to ask to just give levo a go if they have run out of other suggestions. Writing is a great idea as can send all the right info and maje sure i make my case properly - its so easy to get flustered and flummoxed in a GP appt.
When you say ask about a doctor that prescribes thyroid meds, do you mean privately as presumable all GPs prescribe them as thyroid problems are so common?
If GP refuses, was thinking of saying "if you won't help me I will self-medicate but would rather do a trial under proper medical supervision". What do you think?
I was thinking more of it finding a doctor local to you who may have some experience of treating thyroid problems. Didn't want you to walk out and not have an option.
I said to my GP, who wants to help but admits hasn't a clue rgatvu was sobfed up thinking of self medicating. Was told. Ant condone that so I said I appreciated why but hyperthetically if I did would I still get me bloods done and was told yes. I also had an appointment the following week with a new endo, the previous one had retired sobibrished changing over. Don't think I would have done though if my doctor would t keep an eye on me-it's a big step and a lot to learn but I used to take NDT years ago plus I was now having to take Levo with antihistamines as had started to become a problem for me.!
If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells
Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.
(NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)
ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.
When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed
If you can not get GP to do these tests, then like many of us, you can get them done privately
Blue Horizon - Thyroid plus eleven tests all these. £99
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) . This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible
If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.
You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance due to low thyroid levels
Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.,
Thank you for taking the time to reply. Yes, I have taken the advice from this website and done all the tests above. I thankfully don't have hashimotos, but am taking b12, b complex and d with k2 tablets to try to up the levels of these to optimal. I was already on iron tablets as I had a low ferritin test towards the beg of the year and have been supplementing gentle iron with vit c since then and it is gradually going up.
I have ibs-c so do have gut issues.
I have most recently done an active b12 test which came in at >128 (range 25.1 - 165) as b12 dropped at last blood test despite supplementing. Picture not clear though as i stopped supplementing for 4 weeks before I tested in error, and also i was supplementing with a spray prior to this that I had to spit out after holding it in my mouth as it contained sorbitol which i cannit have as i am on a low fodmap diet. Have now changed ny supplement to a tablet and will check again in a few weeks.
I had a similar situation after my husband died. For six months I kept going back to the doctors with hypothyroid symptoms. Freezing cold. Wearing jumpers and fingerless gloves in the office at the height of summer! Severe weight gain, insomnia, only got about an hour's sleep every night!! Consequently exhausted all day to the extent that I used to set the alarm on my phone and sleep in the car for an hour at lunchtime after having tried to warm myself up with soup and the heater on in the car! Kept being told "well you've just lost your husband - you're grieving". Only even got a blood test when I went to see doc with no makeup on!!! Tested thyroid antibodies and I have both antibodies TPO and TGab, so Hashimoto's disease!!!
4 and a half years on I have hypopituitarism and hypoprolactinaemia. Pre diabetes and high blood pressure, all caused I think by not being optimally treated from the beginning.
Keep going back without makeup on and don't give up without a fight. You have to make them understand how rubbish you feel and that it's not all in your head.
Keep a diary of symptoms and how you feel and do some research. Take your diary to your next appointment and ukerp doing this until they listen.
If you can afford it, get a thyroid test from Blue Horizon and make you're they test for TPO and TGab antibodies.
That's interesting as I had an oestrogen test accidentally done at the wring time of the month and it was really high - it was mid-cycle when oestrogen should be at its highest but it was sonething 3 or 4 times the reference range for that time of the month when I looked it up (mid-cycle). The test was redone however at the correct time (day 2-4) and was then within range for that time so of course nothing was said about the odd reading.
Get a print-out of your latest results with the rangs and post them. Tell the surgery you want a copy each time you have a blood test. They are required by law to give us a copy and some charge a very small sum for the paper/ink and some dont.
Members can then help you to feel much better and not feel so unwell.
We need a TSH around 1 to feel well and of course a good FT4 and FT3 level.
Many are suffering the brunt of the 'modern' method of diagnosing hypothyroid symptoms and that's done to the barbaric TSH of 10 by which time people can be very, very unwell. Just for information and this isn't the only doctor who knew/knows how to treat and for that reason, like many in the UK, had licence withdrawn for saying the truth.
the ranges are so pointless. By the time my TSH was 3 i was becoming very ill, by the time it hit 4 i was almost comatose, house bound and in chronic pain but still in range. I saw a private dr started self treating and within weeks felt better and months later was getting better. My gp could not get over how well i looked and was embarrassed that it had indeed turned out to be my thyroid. In hindsight i wish i had not wasted all that time proving my dr wrong and had concentrated on getting well by myself.
If only drs knew how much we want to be well, we are not just moaning sofa surfers we are ill, we dont need anti depressants we need to be listened too, we know ourselves best.
Skin crawling and tingling, prickling, numbness and vertigo can all be symptoms of a very low B12 - very common with hypos due to low stomach acid and associated malabsorption. Low B12 can be very dangerous and the longer it goes on the more chance that permanent nerve damage will occur. Please have it tested urgently and don't believe the standard UK ranges. Anything less than 500 can cause neurological issues and damage, ideally it should be close to 1000, wheras the typical lower end of UK range is set around 190-200. If yours is very low you may need injections to rectify it. If it is just low you can take tablets - sublingual are best, or sprays as a supplement. Please have it tested then come back with a new post for advice when you have a result.
Hi Gillian Thank you for your reply. I have had B12 tested. First test it was in the 400s. Tested again a few weeks ago and it had fallen to the mid-300s. Just had an active b12 test which was >128. Am supplementing now with b12 and a b complex but my feeling is that B12 is not the main issue. Will retest in a few weeks to check where it is at and will be interesting to see whether supplements have any effect on my symptoms.
Hi minimum, low thyroid brings on so many different symptoms because ALL your cells need thyroid hormone. Sometimes more investigation is necessary. I know it may not be possible for you to force doctors to do that but learning more yourself may put you in a position to help yourself. Explore the lab tests here and how they explain what is happening.
Hello, This statement jumped out at me "She then proceeded to explain how they might not be able to find the cause of my many many symptoms at all". Statements like that from a doctor make my blood boil! If you have many symptoms and feel lousy OF COURSE there is something wrong with you and it is her job to find out what that is! I truly hope for your sake that it is a straightforward thyroid problem that can be resolved easily once your thyroid levels reach a point that they can accept as "out of range".
Sadly for many that is not the case and other things need to be tested. This however is NEVER done in the UK either by the NHS or privately. Many, many of us have had to travel to the USA, and in some cases Germany, to find answers for ourselves or for those we love. There are many, many causes for thyroid dysfunction including heavy metal poisoning, Mycotoxins, Lyme Disease, Chronic Viruses and mast cell disturbances. Let me know if your doctor refuses to help you further and I will send you a list of links which may well help you.
For over 20 years we chased down the causes of my daughter's ill health, 12 of those years convinced that once we got her low thyroid sorted out all else would fall into place. WE WERE WRONG!! She has only finally begun to get better now that we have seen a brilliant doctor who was able to find the reason for her low thyroid and all of her other symptoms.
Good luck in finding some solutions from your GP, but remember always that it is not good enough to tell you that she may never find the cause of your many many symptoms. That's outrageous, but a statement we also heard! We took the situation into our own hands and have found answers. Good luck,
Thanks for your reply Jane. I will come back to you for those links if I don't get anywhere with my current investigations. Glad you have found the answers you need for your daughter and hope she is on her way to being well.
HI THERE. I AM SO SORRY YOU ARE HAVING ALL THESE HEALTH PROBLEMS. I THINK YOU NED TO SEE YOUR GP AGAIN AND PLEASE TELL HER ABOUT THE PRIVATE BLOOD TEST RESULTS. IF THEY DONT KNOW EVERYTHING THEY CANT HELP YOU. AND TELL HER AGAIN AND AGAIN IF NEEDS BE HOW TERRIBLE YOU ARE FEELING. I HAVE HAD TREATMENT NOW FOR 7 YEARS FOR UNDERACTIVE THYROID WITH 3 INCREASES IN MEDS AND STILL GET BAD DAYS. THE TIREDNESS IS THE WORST FOR ME BECAUSE I ALSO HAVE MS. PLEASE SPEAK TO YOUR GP AGAIN AND AT THE END OF THE DAY IF YOU ARE STILL NOT HAPPY YOU ARE ENTITLED TO ASK FOR A SECOND OPINION. GOOD LUCK.
Hi there MiniMum - feel rubbish too - I'm the opposite - My FT4 is high, less than a point from abnormal and my FT3 is low less than a point from abnormal - so I'm normal! I've got another thyroid blood test Fri, don't know whether to hope I'm getting better or worse so that I might get some treatment - feel I've been left to it - felt rotten since July but I've got a 20 yr history of M.E / Fibro - don't feel I have much of a life. I did show my GP the BH test and she is testing my FT3 & 4 which isn't usual. Hope you can get somewhere x
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