I wonder if someone might be able to help me. Everyone seems so lovely and helpful! Apologies if this post runs long, the road to this point has been a long one.
I first started becoming unwell in my early 20’s, and started going to my GP around the age of 23/24 (I’m now 28). My symptoms gradually worsened over a period of a few years. It started with fatigue and muscle and joint pain. I gained weight steadily. Developed awful eczema on my hands. My eyes were dry and itchy. I couldn’t regulate my temperature. I was getting pins and needles and couldn’t concentrate. I was exhausted and had no libido. My periods became very light. My hair thinned and I developed a (very nearly complete) bald patch at the front of my head.
I had lots and lots of tests over a period of several years. Thinking back to it now I remember my TSH often coming back as abnormal but my GP never looked into this further as my T4 was in normal ranges. I also had an ANA antibody test as there’s a lot of auto immune in my family (Graves disease, diabetes, rheumatoid arthritis, and my mum has a condition that presents a lot like lupus), and this was ‘borderline positive’. They never did more with that. I was misdiagnosed with PCOS for a while which turned out not to be the case. My GP seemed convinced it was mental health related and I lost my confidence in challenging him. I felt like they thought I was a hypochondriac. Eventually I was begrudgingly referred to a specialist who diagnosed me with Fibromyalgia.
They started me on Nortryptaline, and things rapidly improved. I lost a lot of weight, my hair filled in, eczema went away completely. I felt alert and active. That lasted about 10 months and then things started to slip again. I had always trusted the fibro diagnosis because I got better with the nortryptaline, but I’m realising now that in the month I was diagnosed, I also started a new, very stressful job, and my relationship of 7 years cake to an abrupt end. I was extremely stressed, and I’m wondering now if it shocked my system into action a bit.
When things started to deteriorate it was gradual, and then all at once. I was more tired. Groggy feeling. Sore. Then I gained 5 stone in 7 months. The eczema’s back, as is the bald patch. The gp kept upping my Nortryptaline, which is now at the top dose and isn’t helping. He ran my bloods in December and said my TSH was ‘up’ but T4 was normal so he wasn’t worried. I’ve just had them done again and my TSH was 4.8 which he said was outside of the normal range (I don’t know what the range is), but again said my T4 was in normal ranges so he wasn’t concerned.
I don’t know what to think. My brother, who sees the same gp, is struggling with fatigue and psoriasis, and also has elevated TSH which the gp isn’t acting on.
I guess what I’m asking is, could 4.8 be high enough to be indicating a problem? I don’t have the confidence to fight my go anymore. But I’m thinking of giving it one last shot and moving to a new surgery. I just need some reassurance that I’m not barking up completely the wrong tree here.
It’s making me miserable. I just want my life back! I thought I had found the answer with the fibro diagnosis, and now I feel like I’m back to square one.
Any insights, experiences, or response would be gratefully received. Sorry for the long post! 😁
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Bubble89
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You certainly sound like you need more thyroid related testing
For full Thyroid evaluation TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and the vitamins
Your GP sounds pretty unhelpful, you might ask him to do these, but alternatively Private tests are available (hundreds on here have been forced to follow this to get diagnosed or to monitor on going medication because NHS often refuses to test FT3
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 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
Just testing TSH and FT4 is not adequate in many cases
I definitely don’t think my GP is the right fit for me anymore. Unfortunately I think I probably should have moved on some time ago, but I just got so beat down by it.
I live in the Channel Islands, so although we’re British isles we’re not under the NHS. Our healthcare is sort of semi private, we pay for all GP level stuff, nurse appointments, then anything specialised is covered by the local health system. I can’t get insurance because of my medical history, which complicates things here somewhat. It’s £50 per GP appointment and £25 a blood test so private testing might be a really good option for me! At least I could get all the specific tests I need.
I will look into them and check I can access them from here. Thanks so much!
Once you have realised that the doctors appear to be the last person to consult as they appear to know nothing AT ALL about clinical symptoms so therefore many people are undiagnosed or undertreated.
You've been ill and suffering for years. Your GP has repeatedly seen abnormal thyroid results, an illness that exactly matches your presenting symptoms and family history, and does nothing! For both you and your brother!
What does he think he's there to do?!
Yes, anything out of range with thyroid indicates a problem, as the ranges are pretty broad. 4.8 is not a result that makes my head spin, but it's vanishingly unlikely a healthy person would have a result like that.
As other have said, you need to see the rest of a thyroid panel, not just the TSH and freeT4. It's the freeT3 that will really tell us what's going on, and the antibodies, as you will likely have Hashimoto's, or autoimmune thyroid disease.
It works out well in money terms, because getting the full thyroid panel including vitamins won't be much more expensive than getting a test done at your Lunk headed GP surgery
Thanks so much for all of your replies. You have no idea how much of a difference it has made for me to feel like someone’s actually listening! 😳
I’m going to ge changing Surgery’s on Monday and asking for copies of my blood work. And I’m going to go for one of the private tests. Enoughs enough.
As for family, my nan has Fibromyalgia, Sjorgrens syndrome and rheumatoid arthritis. My aunt has rheumatoid, and my uncle has diabetes and vitiligo (which I believe is also sup immune). His 3 kids (my cousins, they’re all around my age) all jmy w have Graves. 1 is also diabetic and 1 also has vitiligo. My mums health is bizarre to say the least. I don’t think she’s ever had the treatment or danything agnostics she needed. She’s recently changed surgeries so maybe that will happen now. But she has a severe UV allergy which developed after I was born, and has intermittent kidney and liver difficulties. The current thought is that it’s lupus related.
Hi Bubble89. I'm happy you're changing docs and pursuing better care. You don't deserve to be treated like this. I'm sorry for the treatment you have received and hope everything comes out right very soon. Take care. irina1975
If you have the full blood tests done by the private companies mentioned above, what do you do with the results then? Do you have to then pay to see a consultant specialist and then pay for any treatment privately, or can you present these to the GP and try to persuade him/her to be refer you under NHS.
The first thing to do with your results is to post them on here for members to interpret and suggest what your next step should be.
If any problems show up you can show your results to your doctor and if he won't accept them then you can invite him to do his own. What you don't do is say you have taken advice from an internet forum but you could say that you have taken advice from NHS Choices recommended source of information about thyroid disorders (which is ThyroidUK).
Hi Bubble89, when you get your private testing done make sure you get the whole thyroid bundle that also checks Vitamins B, D, folate and ferritin as these are often very low in people with hypothyroidism and correcting the levels has a huge impact - as much as getting levothyroxine if you need it! Personally I noticed as much of an improvement in correcting my B12 and D levels as taking levothyroxine.
Hi I totally know where your coming from with rubbish doctors, my doctor made me very ill a few years back by reading my results wrong and dropping my levothyroxine prescription by 50mg , I could of ended up hospitalised if I had not worked out for myself what was wrong just in the nick of time. And just recently I have had more issues with him not telling me my white cell count was dangerously low, it was not until a consultant at the hospital who overlooks the results wrote to my gp that anything was done, I refuse to see him now, and I keep a very close eye on my results, plus I am under the haematologist department at the hospital due to now having neutropenia, that they say is connected to my thyroid problem. yet they will not test me for t3 or antibodies, as apparently of my age and the fact that I have been on levothyroxine for so many years the test will give a false reading ? Anyway my advice is to get private tested, which I am going to do, and get print outs of all your results, and post them on here as they are brilliant way of getting information and support . Good Luck
Unfortunately once you have one auto-immune condition you can easily develop another if you don’t change your lifestyle etc, i left the GP crying after pushing for an endo review because he wouldn’t treat me for hypothyroidism, the endocrine wrote back and stated he agreed with me and the GP was wrong 😳 post your results and people on here will guide you. If auto-immune conditions are known in your family though please read the “root cause” by Izabella wentz, it’s amazing to read and some of the information about prevention and healing is fantastic, a life changer for me honestly x
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