Hi, I've never used a forum like this but I really need some advice or even just some empathy.
I've been suffering with hypothyroid symptoms for a couple of years (extreme fatigue, weight gain contrary to lifestyle, dry skin, menstrual problems, very low mood) and have had to beg my GP for blood tests on multiple occasions (always accused of hypochondria) and I'm always "borderline" on tsh & t4. A few months ago it finally showed up, high TSH, borderline low T4. GP wanted to 'monitor' it but I insisted on a referral to endocrinology.
I had my endocrinology appointment last week (I'll leave out how horribly inappropriate the consultant was as it's not relevant). Had a load of tests and not much consultation but understand that it's hard to consult without numbers.
Today the consultant rang me to tell me I tested highly positive for anti-thyroid antibodies but my TSH was normal. He babbled something about "you'll likely have problems in pregnancy but I guess you don't mind as you're on the pill" and "you could get a goitre but that's not a problem" (rather not if I can avoid it!!!)...... I asked if there were any treatment options and he said I'd have to wait until it progresses. I mentioned my symptoms and he said they're not related if TSH is normal. I suffer badly from anxiety and the brashness of his phone call led to me feeling really panicky and tearful.
Is that really it? I have to wait until I have a grapefruit in my neck, I'm 2 stone heavier and can't get up at all?? I've read a lot that early prophylactic thyroxine treatment can be really beneficial in this situation but how do I go about that from here if my gp and consultant are so dissmissive? Can anyone advise how much going private would be? I'd do it in a heartbeat if I could afford it.
Really appreciate any advice anyone can offer!
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Zoz1
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I'm so sorry you feel unwell and the people that should help you aren't.
First of all and the most important is; What are your blood results? If you don't have them you will have to ask for a copy. You say you've got multiple bloodtests in the past which showed your TSH and FT4 were borderline, please also get those results.
You need to be your own doctor and I know you will not have the energy and power to keep getting in discussion with doctors but unfortunately you'll have to. You have us here, we can help you.
My TSH and FT4 were getting worse and worse over a period of 7 years. I was very ill and kept complaining but just like with you they told me it was nothing, could not be the thyroid. I got a swelling in the neck and they told me as long as I could speak and wasn't choking I was fine. Crazy, isn't it? I got my results and I did see a pattern, TSH was getting higher and higher and FT4 kept getting lower. I showed this to my GP and thank god I got a referral to a endo. He was nice and tested for antibodies, I wasn't only hypo but also got Hashimoto's disease. Finally after 7 years and am now getting treatment.
I wish you the same and because your story does sound like you're hypo and you have borderline blood results AND antibodies (hello Hashimoto) you should find a doctor that will help you out and prescribe you levo.
Start at the beginning; Copy of your blood results and posting them here. You will get there, just with a little help and a lot of strength.
Thank you so much for your reply, I've booked an appointment to see my GP next week so will try to get my results then (I have been told I can't have them in the past because I might 'misinterpret' them, patronising and I'm fairly sure I have a right to see them?). In their absence, I know that the ones I had last week were 'more normal' than the ones my referral was based on. From what I understand though, levels fluctuate hugely in early stages?
My worry is that I've seen the endo now and he didn't help, I don't know who I turn to. I know my GP's answer will be 'the expert says you don't need treatment so nothing I can do'
Will post results when I get my hands on them, thank you, it's terrible but I haven't actually spoken to anyone since I got off the phone!
It is your right to see the results and to get a copy. If they ask you why you want them you don't have to answer. I've always asked for a copy and this wasn't a problem. They can ask you to pay for it (just a bit because of the print costs).
I don't know about the levels that fluctuate. Speaking fron my experience that started when I began treatment.
I understand you don't know where to go since you've already had a appointment with a endo. There are a lot of doctors and I'm sure someone here can help you with a name of one in your area. You can get a second opinion, maybe your GP will help (they can decide to start treatment). Also from my experience if you ask for a trial they may want to go with that.
You have come up against what in any language would be a 'brick wall'. It's a pity he was so dismissive and it seems to me you have clinical symptoms and that you need treatment. It is cruel to insist that the TSH must reach 10 before being given medication. It doesn't always reach that number but the patient has disabling symptoms and we always thought doctors knew best but, with regard to the thyroid gland, it seems it is a mysterious object in our bodies that only we can feel the consequence of when it's not producing hormones as it should.
So we have to read and learn in order to recover our health and sometimes it has to be done, despite the doctors like the one you happened upon, expecting some knowledge and assistance.
Get a print-out of your most recent blood test results with the ranges and post on a new question. If you've not had one, ask GP for a Full Thyroid Function test (probably wont do Free T4 and Free T3 even if requested as labs don't usually do them if TSH is 'in range'. If you can afford it you can have these privately from a recommended lab that Thyroiduk.org.uk use, if you use the code you get a small discount.
Ask GP to also check Vitamin B12, Vit D, iron, ferritin and folate. If your last blood test for thyroid gland wasn't first thing in the morning request another.
The test should be the earliest possible and fast (you can drink water). If you are on levothyroxine leave about 24 hours between the last dose and the test and take levo after. The TSH has a rhythm and is highest very early a.m. and drops throughout the day.
Some countries prescribe when the TSH is around 3. Some surgeries charge a nominal sum for paper/ink for copies but always get one for your own records.
With high antibodies he should have prescribed levothyroxine. email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article (Its by an ex President of the British Thyroid Association and read what he says about antibodies being present.
Yes we have to make our way forwards unfortunately but we are learning all the time and eventually some of the members decide to take things into their own hands. They are fed up not feeling 'right'.
Thank you so much for all the replies. I've booked an appointment with my GP for next week to get the results.
I know the test I was referred on showed high TSH (out of normal range but not requiring treatment) and T4 was low end of normal. Tests endo did were 'normal' but he wouldn't give me numbers - he did say they were better than the previous ones. Antibodies were high. Vit D, B12, iron and folate were all very healthy but not surprising (to me) as my diet is good. Negative for Epstein Barr and other viruses.
Very healthy according to the endo? I'm sorry to say this but my experience is that you can never trust these kind of sayings. How many times I was told my bloods were "great", "healthy", "couldn't be any better". All false when I asked for a copy, not just the thyroid.
You can only trust yourself in this and your results.
Healthy according to GP, endo didn't do as many tests as GP. GP did full fatigue screen which I'll ask for the numbers on, she said all normal but thyroid was on the low side which is why she referred me. Endo did thyroid function, antibodies and adrenal function - very positive for antibodies but thyroid was better than when GP did it. An endo should at least know how much hormone levels can fluctuate! I hoped a previous 'low' combined with antibodies would be enough to treat but he'd rather wait until my thyroid completely gives up rather than help it out while it's still fighting!
I understand and agree with you. Do you get your blood test always around the same time? The TSH has a cycle, it gets to the highest point in the night and lowest midday. So if you get your blood test very early in the morning (I go when the lab opens) you can profit from this when you are borderline hypo. With me my TSH was 8 early in the morning but 4 midday.
Vitamins and minerals, I guess that's with the fatigue screen, are not simple. For example if the ranges for vitamin B12 are 150-600 and your result is 155, the lab and doc will say this is perfect. Not true and you could benefit from supplementing. Same story for iron, vitamin D (often deficient).
Because you have antibodies and borderline thyroid results you should get a trial if you ask me. They are right not to treat right away, often they want to check it like every 3 months and if it gets worse you will get a treatment. This is because sometimes the thyroid corrects itself.
I think it is a good idea you go to your GP with all the information. Sometimes antibodies are elevated because of a other health problem, I would say you have enough reason to be taken serious and you need someone to figure it out and help you.
Ps; I would never take meds on your own without any guidance of a doctor. You need to know what's going on (you will find out with a good doctor).
My last test was about 10am ish so reasonably early. I supplement all B vitamins and vit D anyway in addition to good diet which is why I wasn't surprised they were ok but will still double check the numbers in case.
Can thyroid right itself if you're strongly positive for antibodies? I was under the impression from what I've read that it's only ever going to get worse? - why I'm so worried.
I think it's the good doctor part that's the problem, the ones at the practise I go to are incredibly dissmissive and whenever I've suggested anything in the past they seem to do the opposite deliberately. I wouldn't mind the endo making the decision he has if he'd at least even discuss it with me rather than tell me results in a 2 minute phone call without so much as a follow up. I think I might try someone's suggestion on here to see if I can find a recommendation for a good one in my area.
I don't know how it works with the antibodies. If you have Hashimotos disease then yes, it will only get worse because your body is destroying your thyroid.
I understand and it's really not okay how the endo "helped" you. It's a shame but there are also good ones.
Do you need an appointment to get your results. Can you not just ask the receptionist, they may have to ask permission of doctor but by law they cannot refuse to give them to you.
Someone posted a link about it the other day but can't find it the moment.
I thought I'd book an appointment now that I've got the positive anti bodies result. I've printed off a bunch of research papers which say if you have antibodies you should be treated even if thyroid function appears normal. I thought it was worth showing to the GP and asking if she'll treat me. If she says no then I'll ask to see a different endo. The last endo said he had heard about the early treatment stuff but he personally "isn't in that camp" - don't see why his personal feelings should affect my treatment and what happens to my body and quality of life! This site has been so helpful at showing me I need to be push for this. I'm not happy to wait for it to progress if I can treat early and stop it progressing. Worth trying to convince the GP as my first port of call!
I agree with Flower - you must obtain copies of your test results - it is your legal right to have them. Normal is an opinion not a result - Docs are trained to look at ranges and say all is well - when WHERE you are in the range is key when you are unwell.
Bumping along the bottom will not make you well - but just add to the coffers of Big Pharma as more and more medicines are prescribed.
I've read a lot to suggest early treatment with thyroxine can reduce anti body load before the thyroid fails, just the endo wants to wait until it does fail! Some studies seem to have halted disease progression with early treatment. It's ridiculous, you don't wait for any other disease to get worse before you treat it! Sorry they were too late on yours but heard quite a lot of positive results from removal in hashimotos too, are you better for it if you don't mind me asking?
Your Endo wants to let your antibodies continue to attack your thyroid gland completely so that you are definitely hypothyroid. Dr Toft of the British Thyroid Association recommends that if we have antibodies and symptoms to prescribe levo "to nip things in the bud".
It would be like looking for a needle in a haystack. You could put up a new question asking if anyone can send you a Private Message of a good Endo around your area.
How completely awful for you! How on earth do they expect us to trust and respect them when they do such diabolical things??? If we find out more than they do about thyroid issues, that's not our fault, that's thiers. I'm certainly in favour of arming ourselves with as much knowledge as possible. And yes you do have the right to a printout of your bloods.
Right now, one of my daughters, very sick for several years and prescribed the most awful drugs for pain, depression and inability to sleep, had her TSH tested and it was high, wasn't called back for another test, found out, did another test, it was lower, but still 4.5, so not given Levo. So, she got her own!! Shes only been taking it for a few weeks and tells me she can get up at 6 and feels so happy and much more energetic. I feel we should take a trip to her GP and present her as a success story, not BECAUSE of the GP, but DESPITE the GP. We wait and see. I do hope you can get some action before things get far too out of hand Zoz1
People buy their own thyroid meds (T4 (levo), T3, Natural Dessicated Thyroid (NDT) ) on the internet, with a prescription if they can get one, without a prescription if they can't.
If you live in the UK it is legal to buy and import prescription-only meds (apart from controlled medicines like tramadol or morphine, for example) from abroad for your own use or for the use of a member of your household.
If you buy from within the EU it gets delivered with no hassle. But if you buy from outside the EU then there is a possibility that your parcel will be stopped and inspected by customs. You get charged VAT and any other customs charges that apply if the parcel + postage + packing costs more than £15. The delivery company has to do the admin and collection for these charges, and so they charge a fee too. It can add substantially to the expense once all these charges are added in.
You obviously have to be careful buying medicines on the internet. You really need to get a personal recommendation from several sources before deciding which sites to trust.
We are not allowed to discuss the nitty-gritty of sourcing meds on the internet on the forum. If you are keen to follow this up, then ask a new question, asking for reputable websites that sell X (whatever it is), and ask for replies to be sent via private message.
Thank you, I had no idea of the ins and outs of such things! I intend to exhaust all my options of getting treated 'legitimately' first but it's good to know there are options.
I think the internet could be a rather dodgy place to go, but In some countries it is sold over the counter in pharmacies, one such country is Hong Kong. That is in no way a 'backward' country, in fact it was as you know under UK rule for many years. The Levothyroxine available there is actually manufactured in UK. There are many drugs in the Hong Kong pharmacies which you cannot buy, so clearly they don't view Levothyroxine as one of the dangerous drugs.
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