Need some advice on handling doctors/getting help

Hello! I have read this community a lot and want to thank you all for your help and general guidance. I am reaching out as I have finally reached my wits end and don't know what to do.

Background: 25 y/o female, I am diagnosed as mild hypothyroid a year ago after 5/6 years back and forth trying to solve severe fatigue. Right now I am taking Levothyroxine 50 micrograms. My test results are free T4 = 12.9 and TSH = 2.44. I am told this is within normal range but it means nothing to me. I asked to be tested for T3 and was refused. Diagnosed as low Vit D. Just started taking Vitamin D supplement 20k units.

Problem: I have an apt next week but I feel like I'm being dismissed by my doctor/s. I am still unwell. I tried to be more pushy last time about being tested for other things which is, actually, how I got diagnosed with low Vit D - which they were initially NOT going to test me for.

My main question is, how should I approach this? I've seen 3 different doctors in the same practice and felt treated the same by all. They treat the symptoms but not the cause. I get told (verbatim) "you seem fine". Each apt is no longer than 5 mins and I'm ushered out. How can I see an endo? Do I have a right to? Will it even be worthwhile...? I am naturally a shy person and lacking assertiveness and this situation is upsetting me.

Background on symptoms, incase it's useful: Extreme fatigue. Recently, painful joint problems (as I type this, I'm unable to use my index finger) affecting my ability to work (had to take a day off work because I couldn't use my hands). Got blue hands last week, dead hands in the night. I get bad brain fog, have trouble comprehending words and speaking. Terrible memory. Been extremely depressed at times. Whenever I eat I get extremely tired (also affecting my ability to work). Problems breathing at times, feels like I can't get enough air. Breathing through nose is impaired. Random dermatitis of various types, red rashes, dry skin etc. Cold all the time but issues with excessive sweating. That's just the main stuff but had various other minor things.

I've had no advice on what symptoms could be related to thyroid or what I should expect to live with.

Thank you so much for your help.

12 Replies

oldestnewest
  • Sorry to hear you're unwell. You may find your hands feel better after your vit d kicks in (or at least I did, and it turns out that's my main symptoms of being low in d).

    Can you have a private test incl t3? Blue Horizon offer several thyroid and vitamin tests. Then you can come here and post your results.

    You can ask to be referred to an endo but in my experience it is trying (you wait a long time for the appt and they treat you like there's nothing wrong with you) and may or may not be worth it. I ended up getting the thumbs-up for a t3 script from my endo, but not much else. You possibly could get things done if you persevere w your gp and/or others in your surgery.

    Your tsh is a bit high for someone who is symptomatic and on meds. You probably should be allowed to try a slightly higher dose, 75mcg maybe, and then have a test in six weeks.

    Do you have the lab ranges for your tests (the numbers in parentheses)? It would help put the results into perspective.

  • Thank you so much for the response, that's what I needed to know. I won't go through the aggro of seeing the endo then, I worried that would be most likely be the case.

    I'll stick with the Vit D as I'm on a loading dose at the moment and see how it goes. I don't understand why they don't explain what could be related as it would stop wasting mine and doctors time. They didn't mention the joint pain could be because of Vit D.

    I don't have any other results than what's posted, that's what they gave me over the phone. Can I request to have them printed and posted or something?

  • Not that you shouldn't see an endo, just don't put your life on hold and/or have high expectations of the outcome. You can feel so vulnerable when hypo and a lot of people here are just devastated when the endo shrugs their shoulders.

    Yes, you can request to have copies of your results. You may be asked to pay something for old copies but there is a cap on the charge. I want to say it's £10 but maybe someone will have the link to the charges. (For what you're asking it shouldn't cost you more than a few quid.)

    I know what you mean about wasting time. In truth they just don't know that much. You may find that a lot of your rashes and aches and pains just go away when you're on the right meds, but no one can predict. A lot of folk are deficient in vit d or have an underactive thyroid or coeliac and are entirely asymptomatic, so it's impossible to say how you'll feel when you're well - until you're well.

    This is a good start though, getting your d sorted and getting your results. Try to be kind to yourself and don't expect too much of yourself. Get your results posted here and see where you are.

  • OK, thank you, will request to have those sent over and will post them! That's true. I don't suppose doctors will know EVERYTHING. I suppose I'm mostly frustrated I feel so rushed out. One doctor I saw was literally speaking over the top of me. I understand they're pressed for time and that's not their fault but seems counter-intuitive when I just have to make MORE visits because of lack of explanation, but I digress.

    Thank you for the speedy replies :)

  • Oh gosh, of course you feel frustrated. I don't blame you! And often the doctors don't have a manner that makes you feel looked after, and I can't stress enough how vulnerable we can feel when we're unwell, so that offhand manner can be so hurtful and/or insulting. The outcome for me is that I see my gp as little as possible, even now that I've found one who meets me in the middle thyroid-wise. I'm afraid she'll get jaded and then what will I do.

    The average gp doesn't seem to know or care a lot about thyroid problems or solutions. It scares me a little that the nhs is cutting it so fine that something that can be so profoundly disabling isn't considered a priority, but there you go.

    Good luck! I look forward to having a look at your results when you get them. :-)

  • If you only started taking vitamin D supplements then the doctors will presume your pain is due to your low vitamin D levels so you will get ushered out again.

    You need to wait 6 months before you can go back to them and say the vitamin D supplements haven't helped as it can take 6 months to get your levels up to adequate. Adequate in this case is over 75nmol/L. Optimum is 100nmol/L.

    So don't be surprised if you are dismissed again.

    You probably won't convince the GPs to do more tests for you until that timescale.

    I suggest if you think you have low levels of vitamin B12, folate or ferritin then you do your own tests through Blue Horizon. Though personally I would do a full blood test covering vitamin B12, folate, ferritin, haemoglobin, an iron panel and thyroid hormones due to your age. (Yes it is expensive but it is your health.) Then if your vitamin B12, folate, ferritin or haemoglobin are below the range go back and see your GP.

    Also T3 is not available on the NHS in many areas as a routine test. Even if a doctor, endo or GP, decides they want the test done on a patient with a known thyroid problem the lab often refuses to do it. This leaves the doctor battling with the lab to do the test.

  • OK, thank you. I'll stick with it and see how it goes for now. Wish they had explained Vit D causes other issues as they only mentioned the fatigue. I'll have a look into private tests if the Vit D doesn't help!

    Thank you for explaining that - again wish they had mentioned this! I assumed it was maybe something like that, all I was told was "there's no point testing T3" and that was that.

  • As you are having breathing problems and skin issues I suggest you get the other tests anyway and not wait 6 months to do them, OR more importantly even expect the GP to do them at all.

    A low vitamin D level doesn't cause breathing problems but low iron levels do - this is why I suggest you get the haemoglobin, ferritin and full iron panel. Also low iron, low vitamin B12 and low vitamin D all contribute to skin problems, brain fog and numbness.

    Regardless if your breathlessness gets really bad before you can do a Blue Horizon test e.g. you are on your way to work, out shopping or even in work, don't wait but immediately get yourself to A&E. Get someone to give you a lift or get a taxi. It isn't uncommon for women to turn up to A&E with iron problems that GPs don't diagnose.

  • Thank you, that's good to know. I'm not actually too sure what I've been tested for recently so going to request the results and post them, I may well have been tested for some of those things!

  • It would be interesting to see the ranges for these test results if you have them. However, most people don't feel well unless there tsh is 1 or under, with a t4 in the upper part of the range. I doubt your t4 of 12.9 is at the upper end.

    Your symptoms do sound like hypothyroidism, low vitamin D and low b12. Could be one or all of them! If you can get the results of your vitamin D too that would help. You really need to have the t3, vitamin b12 and D, folate, ferritin and thyroid anti bodies tested too.

    As has been suggested already, you may have to do what most of us have done and had blood tests done privately, blue horizon medical is often used here. At least you will know what you are really dealing with then and can return to your doctor with facts. My GP was dismissive until I told him information I learnt on here and showed him my private blood test results. He then referred me to an endo so I got something! Good luck. :-)

  • Hello! Yes, definitely going to request the results and will get them posted. Will investigate having private tests done so I'm ready for that also! Thank you for the advice.

  • If the brain fog lets you, learn as much as you can about thyroid problems.

    A good place to start is the ThyroidUK website.

    thyroiduk.org.uk/tuk/index....

You may also like...