I have been trying to get a diagnosis/treatment since 2010, but no luck so far... I've seen 4 endocrinologists and a number of other specialists (urologist, gyno) but constantly being discharged and being told I haven't got a thyroid problem or any other problem. I've had lots of blood tests over the years, some of which are as follows:
I have had an ultrasound which showed that my thyroid wasn't enlarged, but I have got some tiny 3-4 mm nodules in the thyroid isthmus with no other nodules or cysts. In November 2014, my anti-TPO and anti-TSH receptor antibodies weren't raised. My vitamin D was 43 nmol/L and borderline low. My serum B12 and folate were within the normal range apparently but I haven't got these results.
The specialist who I saw last has said I haven't got thyroid dysfunction, so I know that I am going to be discharged yet again with no help...
My mother has had thyroid dysfunction for years and has an enlarged goitre. I have lots of symptoms including: Fatigue (especially after exercise), low libido and low hormones (lack of cervical fluid), raised prolactin, cramps, urinary frequency/urgency and incomplete bladder emptying, thrush, UTIs and urethritis, palpitations, IBS, twitching.
I would like some advice on what to do next and have a few questions...
1) Does anyone know of a good/knowledgeable endo in the West Midlands who might treat me? If so, I would be very grateful if you could send me a private message with his/her details.
2) I am willing to self-treat but I don't know where to start with that one and would need guidance on what to take and where to get it from... Please message me again.
3) NDT? I've read quite a lot about this, and this is also an option for me...but don't know how much to take or where to buy it.
Thanks in advance for your help, it will be much appreciated.
Written by
Sheepcoat
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Welcome to our forum and it isn't unusual to be told we don't have a thyroid problem. These are some links for you.
If someone has a 'name for you' it will be sent by Private Message as you suggest as it is against the guidelines to name doctors on the open forum.
As you have antibodies, it suggests you have an autoimmune thyroid disease called Hashimotos and according to the ex President of the British Thyroid Association should be treated. Email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article. Highlight the question re antibodies and it says to 'nip things in the bud' levothyroxine should be prescribed.
Thanks a lot for the info shaws...it is very, very useful and I am most grateful. I have become a member of Thyroid UK and all of the information is superb. I took the booklet listing all of the hypo symptoms to my specialist and she asked to keep it! I will definitely email Louise now for the Pulse Online article.
Everyone has been so helpful on here, especially greygoose. I felt like I was on my own until I found this forum- it is an absolute god-send.
Two things we learn very quickly here on HealthUnlocked.
(1) There's no such thing as borderline. Borderline means "very deficient" 999 times out of 1,000.
(2) Never accept "normal" as a response to results of blood tests!
On the face of it, your thyroid doesn't look too bad, though you have antibodies, so you're right to wonder whether things will stay that way. But before going down the self treating route, you really need to know what your B12, Vit D and ferritin are doing, as if any of those are deficient you will feel poorly.
You're entitled to the results from your doctor, so ring up and get them - with ranges if you can - then post them here.
I am going to get my B12 and folate results asap and will post them on here. My vitamin D was 43nmol/L and was told it was borderline low (ie very deficient!), so will start supplementing that.
Sheepcoat, realistically I don't think you'll find a doctor willing to prescribe thyroid replacement with those results. TSH is 0.6-1.5 is considered euthyroid (normal) and FT4 is above half way through range although not as good as in June, but that can be due to seasonal fluctuation as spring/summer results are often better than winter.
Your vitamin D level is suboptimal. Optimal is 75-200 but just over 100 is usually fine. Buy vitamin D3 softgel capsules or spray and take 5,000iu for 6 weeks to build levels and then cut back to 5,000iu alternate days. Low vitD can cause musculoskeletal pain, fatigue low mood similar to hypothyroid symptoms as can low ferritin so ask your GP to test it. Good vitD levels aid T4 to T3 conversion which will also improve your wellbeing.
Ask your GP practice manager or receptionist for a printout of your B12 and folate results with lab ref ranges post them in a new question for advice. 'Normal' can mean bottom or top of the range and B12 is better at the top and folate in the middle of range.
You may be able to slow down or even eradicate the TPO antibodies by adopting a gluten-free diet and g-f may help considerably with relieving IBS. Magnesium (various types but not oxide) tablets, spray or epsom baths at night can aid sleep and prevent cramp and twitching.
Thanks for the honesty, Clutter, and it will save me a lot of time, money and effort hunting down an endo who probably won't treat me. With regards to my thyroid results, I did usually go in the morning to have blood taken, but went later in the day on the odd occasion, which I've found out can affect results (going at different times).
With the vitamin D capsules, do you mean to take 5000iu per week? As my endo has recommended 800iu per day. It is also very encouraging to know that vitamin d aids the T4 to T3 conversion- I can't wait to start taking the capsules. I've never been so excited over vitamins in my life! It's funny that my symptoms started getting a lot worse when I was spending the summer in Crete, and would've been getting more than enough sun!
I will definitely get my B12 and folate results and post them here.
Hi Sheep, I agree with Clutter and others. Your results are very good although your FT3 which is the active hormone and the one that has more to do with symptoms could go higher. But it could be that your ferritin is not as high in the range as it should be. Check that out and see if it is over 70 or at least half way up the range you are given. Iron is very important for conversion of the T4 into the FT3. Also if you raise your vitamin d level, you may notice a real improvement.
Hi Heloise, wow what a fantastic doctor! He really knows his stuff. I am feeling so much more positive with all the help I'm getting from this forum- I actually feel a bit tearful with emotion (probably due to my thyroid)! I'm seeing my GP tomorrow and so will ask for my ferritin to be checked. I know I had it done a few years ago but was told it was normal back then, and so that was the end of that. I really like the sound of this vitamin D
Well, if we take those June 2014 results, where you have both FT4 and FT3 results - which is most important - it looks like you aren't converting very well - which is usualy for Hashi's people - and you do have Hashi's. Your FT4 is higher in its range than the FT3 in its. Which means bad conversion.
Unfortunately, doctors don't take either Hashi's nor low T3/bad conversion into account. The 'good' news is that this can only get worse, and eventually they will have to take notice.
However, the bad conversion could be due to low iron. Your D is low so probably everything else is; too. 'In range' for B12 and folate is not necessarily good enough, so best to get those results and supplement as necessary.
But I'm not surprised that you have symptoms and aren't feeling well with that low FT3!
Hi greygoose, thanks ever so much for more of your wonderful advice...it seems as though you've become an expert!
I wish my Hashi's would get worse asap so that I can get treated! I will be getting my B12 and folate results and posting them soon. Hopefully taking the right vitamins will make me better again- I'm staying positive
I'm pretty sure she said she said she didn't have antibodies. I would suggest you do an adrenal function test as many of your symptoms are similar to adrenal fatigue and even NDT won't really help if your adrenals are out.
Hi mistydog, I've got peroxidase antibodies which were 77.2. I think I had my adrenals tested a couple of years ago but was told they were normal. The GP will only test cortisol, but the endo did another more specialised test.
Sorry, my mistake, I misread what you put. Didn't look at the test results properly and then it said they weren't raised so I assumed you didn't have any. People on this forum are fab, aren't they? Much less judgmental than other places I have been.
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