I am at my wits end, please help

Sorry for the questions but I don't know what to do or where to turn to, I've been diagnosed with an under active thyroid for over 15 years and I still have the same horrible symptoms today that I had 15 years ago. I've been on 75mg of levothyroxine. I've been back to my GP numerous times over the years with my ongoing symptoms and all he does is say I'm depressed and anxious and pump me full of anti-depressants ( the recent ones which are used for anorexia to increase appetite, I kid you not I am fuming!) Despite going to the gym 4 times a week and trying to eat a balanced diet I am 6 stone overweight and cannot shift it. I'm back with a psychiatrist now to sort out my anti-depressants as I really think that the symptoms from my thyroid which I dont feel are being treated are causing my depression and anxiety. The GP's in my surgery is worse than useless, one told me that I wouldn't be fat if I stopped eating cakes and exercised more! I really need to feel better and will do anything that it takes.

Sorry for all the questions but you are the most support I've had in the past 15 years

Would you talk to the psychiatrist about my thyroid issues and worries?

Would you take the Alletess Lab food sensitivity test as recommended by Dr Wentz?

Do I need to see an endocrinologist?

Do you think its worth taking the blood test that include the B12 levels or will the 3 test be suffice?

Would you tell your GP that you are going to self medicate?

19 Replies

oldestnewest
  • Hi there I am in exactly the same boat as you!! It would be good if we could support each other through this to find the answers we need so desperately. I know my doctor will not listen to me and has refused to refer me to and endo...I am on anti depressants am 4 stone over weight but constantly on a diet...tired and fed up all the time and have to wear wigs through hair loss...which my doc knows about but still refuses to listen. I want to self medicate with t3 and do not know how to go about it.

  • The first thing is to check that you are adequately medicated. Go to the doctor's and ask for a printout of your blood results. Then post them here.

    If you have the Patient Access online system at your surgery you may be able to see the lab results online.

  • I am in the same boat with you & also on 75mcg of levothyroxine, but 9 years. Had the odd good period but it never lasts & I seem to be worse after each good surge. Ive recently been diagnosed B12 deficient & trying to get the correct treatment is pathetic as my docs are ignoring the bnf guidelines, so this battle is ongoing.

    I'm being referred to a haematologist which she decided best to look at everything rather than different specialists as had a positive ANA & another gp told me it was lupus, referred me & the specialist said I didn't (he's the one who found the B12 defficiency).

    I've also insisted on a referral to an endocrinologist & am waiting for the appointment to come through.

    I can only offer sympathy & advice to read up as much as you can (but if your memory is like mine none of it will sink in & you'd be best printing everything out, highlighting the relevants & showing it to your doctor)

    I'm changing doctors surgery next week as friends have recently changed & have had positive results with the new doctor than our existing, so I'm hoping they'll follow the bnf & inject me every other day with B12 until my symptoms improve & hopefully the endocrinologist will be good & do all the tests & try me on different medication to see if that does the trick.

    I'm overweight, exhausted, fatigued, unmotivated, uninterested, aching small joints, short tempered, roseacea, pins & needles in fingers & toes, forgetful, memory loss, brittle nails, not great balance, bloated sore tummy often, hair falling out & shortness of breath (but this last one could be my deviated septum that completely blocks one nostril, I'll know by mid April if it is as I've got the op middle of March).

  • You probably know about this but you can get help, advice and b12 to self treat from the b12d.org website. I had to do this as my b12 was so low that I should have had it every other day esp as I had neurological symptoms. Couldn't keep arguing with the GP so I bypassed him and self medicated with their help.

  • Thanks & yes I've read a bit about it but I'm just too scared to self inject as I don't look when nurses do injections/bloods as the needle going in makes me feel ill 😏

    I'm trying to pluck up the courage to ask a nurse friend to teach me but I'm not thee yet. 😂

  • If you haven't got pernicious anaemia, there is a good quality high dose sub lingual tab you can take instead.

    I never thought I would be able to self inject as I hate having bloods done but the needle is much smaller and finer than those used when you have your NHS injections and it really doesn't hurt. Once you've done it once it is a doddle. And it goes in your thigh. 😊

  • Well they 'think' I have PA - still trying to get a solid diagnoses but saying that I do eat all of the foods containing b12 so it's highly unlikely to be diet related.

    I'm getting braver day by day ... think I'll order next week to give it a go.

  • Mine was diagnosed by intrinsic factor antibodies. Have you been tested for this? I also had an endoscopy and they found atrophic gastritis, which is usual/common in PA.

    I hope you manage with the injections. As I said, if I can do it anyone can, it really is a tiny needle! good luck! 😊

  • IF has came back negative but stating that 40-60% of PA positive have negative IF so my gp is writing to the rheumatologist (who she sent me to for lupus as I had a positive ANA & lots of the symptoms) who signed me off saying I didn't have lupus but found the B12 deficiency, to see what he suggests (I'm in email contact with him so he's aware of everything & said he can give me over & above what gp will do but he hasn't told me how to go about it considering he signed me off).

    You've helped with my courage so thanks to you I am ordering tomorrow.

  • I am sure you will be fine with it. Once you start to feel the benefits of the extra B12, you will look forward to injection days!!I think you will feel a boost to being in charge of your health as well! Take care 😊

  • spidernose In your first post, you were asking about NDT and T3. There wasn't much other information. That post is now very long and went off your topic a bit. So let's start again.

    You are considering NDT or adding T3 to Levo. As mentioned, you need to test FT4 and FT3 at the same time before you can go down that route.

    But there are other things needed by us Hypos before any thyroid hormone can work, whether that's our own, levo, NDT or T3. We need optimal levels of nutrients and that is where testing vitamins and minerals comes in. It's also useful to know if our Hypothyroidism is autoimmune, so testing antibodies will tell us that.

    You had some very valuable information given by HumanBean about which test to have from Blue Horizon. So unless you already have had the following tested then it's a good idea to do so

    Vit D

    B12

    Ferritin

    Folate

    I would have suggested these had more information been given in your other thread, but as I said the thread went off on a tangent so these details didn't emerge.

    The best test you can do is the Thyroid Plus Eleven which will test your nutrients, both types of antibodies, and all the necessary thyroid tests. HumanBean linked to it, but to keep everything in one place here it is again

    bluehorizonmedicals.co.uk/T...

    Ring them tomorrow, or order it online. The kit may arrive on Tuesday. Read everything, then read it again so you fully understand. Do the test and send it back no later than Thursday by Royal Mail Guaranteed Next Day by 1pm. If you are going to use first class post only, then wait and do the test the following Monday. You can't risk a delay in the post and it sitting at the lab over the weekend. Post the sample back on the day you do the test.

    Once you have the results you can make a new thread, make sure you put the reference ranges alongside the results. Members will comment. Any deficiencies in nutrients then suggestions will be made for supplements.

    If your thyroid test results aren't optimal, then again members will comment. They can tell you if you are under medicated, whether your conversion of T4 to T3 is good enough or not, whether adding T3 would be a good idea or whether NDT is a better option.

    You will not lose weight until you're optimally treated, and until you are dieting is pointless. Also, hard exercise depletes T3, which is the most important hormone which every cell in our bodies need. If that T3 isn't replaced (because we're not optimally medicated) then we can't lose weight. So ease up on the exercise, take a walk, go swimming, etc instead.

    You really need to learn about your condition, so get reading. Start with ThyroidUK's main website, work through the purple menu on the left hand side, starting at 'About the Thyroid' and keep reading. Ask questions about anything that isn't clear.

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

    As far as taking your Levo is concerned you should take it on an empty stomach, one hour before or two hours after food with water only. No coffee, tea, milk. Leave two hours before taking any other medication or supplements.

    When having your thyroid blood tests then book the very first appointment of the morning, fast overnight (water only) and leave off Levo for 24 hours. This gives the highest possible TSH which is what is needed when looking for an increase or to avoid a reduction in dose. Follow this protocol every time you have a test then you will always have an accurate comparison.

    When doing the Blue Horizon test, do it no later than about 8.30am, fast overnight and leave off Levo for 24 hours, same as a GP blood test.

    Everything else asked about in your post above I would leave on the back burner until you've had the results of this test and members have commented.

  • Thankyou so much for a really detailed plan of what to do...I will do the blood test and then get advice based on the results...again thankyou!!

  • You're welcome Brummy :)

  • I will order the plus 11 test but cant to it until payday I'm afraid as £100 is quite a chunk of money to the average Joe. I will then post my results on here and then wait.

    I had no idea until watching the TV programme that this disgusting treatment by GP's is going on. I am so angry that I (as many others) have had my life destroyed during the past 15 years due to the cost of a medication. Not once in 15 years has my GP ever suggested that my meds may not be right for my thyroid and have pumped me full of dozens of different types of anti depressants, none which work.

    I am willing to pay for any meds/treatment if it means that I can start to feel half human again, they can shove their levo where the sun don't shine

  • spidernose Yes, it's unfortunate that we have to resort to doing our own testing :(

    You could, if you think your GP would be willing, ask for the vitamin and mineral tests to be done by him, saving you the expense of the Plus Eleven, you could then have a cheaper test to cover TSH, FT4, FT3 plus antibodies. One type of antibodies (thyroid peroxidase) is done by the NHS which he could also do, but there are two types and the NHS rarely does the other (Thyroglobulin). We can be negative for TPO but positive for TG, but as it's not tested that would be missed by the GP and we'd be told we don't have autoimmune thyroid disease. Also, FT3 isn't done unless there's something drastically wrong with TSH and FT4. So you can see why we have to do our own tests.

    Do you actually have any test results done by your GP? You are legally entitled to them under the Data Protection Act 1998, so you could pop along to your surgery and ask for a print out (including reference ranges). That would be a start and might give us a clue as to whether you are under medicated.

    It really might be as simple as you're not being given enough Levo. If so, there will be no expense to you of buying your own meds.

    And, like many GPs, yours might just be ignorant of the facts. They all seem to think it's about a number being somewhere within a range, a little white pill, and everything is hunky dory. Sadly, not so. Apparently they get about half a day at med school devoted to the thyroid. And Endos aren't much better, most of them are diabetes specialists and have little knowledge of thyroid disease.

    Hang in there, is payday at the end of the month? Once you've sent your sample off to Blue Horizon ,the results are back within 48 hours, sometimes less.

  • They often have special offers .It was £69 for the finger prick method not long ago.

  • Your psychiatrist is the perfect person to talk to if you think your depression is linked to your thyroid. I too was given many different antidepressants by docs who didn't know any better. But after hitting rock bottom I saw a psychiatrist who took the time to listen, and prescribed me liothyronine. Good luck. X

  • I have a follow up appointment with him in 4 weeks I will certainly talk to him about it. Oh to have a medical professional who listens, you are very lucky.

  • Hi. I've been watching the posts on here for a few days but haven't commented on any as yet. I've been diagnosed as hypothyroid for 22 years and like you have had hypothyroid symptoms for all of that time. I'm currently on 125mcg thyroxine. It was only 2 years ago that I found out it was autoimmune thyroid disease that I have. Apparently the doctors have known this since the beginning but didn't tell me because it wouldn't make any difference to my treatment. I went on a gluten free diet in April 2016 and feel better for that but still have bad hypo symptoms. I saw an endocrinologist in September who tried to reduce my thyroxine to 100mcg because my tsh was at the lower end of the range. I strongly objected and got a referral to another endocrinologist at a different hospital who was equally useless. Both refused me NDT or T3. I have now self-referred to a private doctor who has ordered every test possible and is prepared to prescribe NDT or T3 based on test results when they come back. This is costing me a fortune. Surely there must be some way of holding the NHS accountable for causing all this suffering!! Whenever I've gone back over the years to get help all I got were offers of a psychiatrist!! They've been trying to get me on statins for years and I'm also on blood pressure medication. It would be cheaper for them to give us the correct treatment for the thyroid than treat all the other problems they cause for us!! Sorry, this is much longer than I intended.

You may also like...