Advice needed

[Sammy74]

Hi there,

I've read through loads of the forum. It is very useful - thanks to everyone for posting. I'm hoping someone can provide some advice as I'm at the end of my tether. I have all of the symptoms of a thyroid problem but my test results aren't enough to get treated.

The background is I had post infection IBS for 2-3 years beginning about 4 years ago. It was a horrible experience and I went through the mill with every consultant sending me for loads of expensive tests before I found a consultant who made the diagnosis - He predicted it would clear up and thankfully it has pretty much cleared up as of 12 months ago.

Unfortunately despite constant diarrhea I gained weight during this period and have continued to gain weight subsequently. This is despite working out 6 times per week and a very tight diet (overseen by a personal trainer - who suggested a hypothyroid issue) I am also cold all of the time (hands, nose etc), am quite down and suffer from brain fog.

As I had hypo symptoms my GP did some tests but I do not know the results. One was low so she retested and told me it was fine. Subsequently my GP showed absolutely no understanding but reluctantly agreed to send me to an endo in Cork. I'm not sure hat she said to him in the letter but he did no tests. He said it was all in my head...it was so upsetting.

My husband read about a GP in south dublin who took this stuff seriously so I got an appointment with him. He is expensive and ordered loads of tests and I had me second appointment yesterday. The test results were inconclusive and

he refused to treat me as hypo.

TSH 1.06 (0.27 - 4.20)

Free T3 4.8 (3.1 - 6.8)

Free T4 15 (12.0 - 22.0)

the anti body test he did was Anti-Thyroperoxidase (anti-TPO?) which was 0.1 (0.0 - 5.61)

The only thing that came back as being unusual was DHEA and Cortisol both of which are low.

My cortisol was

Sample 1 awakening 6.8 (5.56-22.2)

Sample 2 4.00 (2.45 - 8.12)

Sample 3 2.4 (1.54 - 5.56)

Sample 4 0.9 (1.17 - 3.18)

The doctor prescribed DHEA but now wants me to do some really expensive gluten tests. I am a bit suspicious of these as I previously did FODMAP and had endoscopies for gluten...all of which showed I had no problems.

I now have no idea what to do next. I really feel that it is a thyroid / hormonal issue but am at a loss as to how to move forward

Has anyone had a similar experience?

Can anyone recommend a dr/consultant in ireland who will take me seriously, I am willing to travel to the UK if I could find a doctor/ consultant who could figure it out?

Feedback about doctors via private messages please in line with posting guideline #25, thank you.

healthunlocked.com/thyroidu...

[Hidden]

Hi I am northern Ireland . Supposed to be a great consultant ulster clinic . Mr BA if you look it up online I'm sure you could make enquiry . Take care

[Sammy74 in reply to Hidden]

Thanks birdhouse. Really grateful to you for taking the time to reply. Will look him up

[Hidden in reply to Sammy74]

No trouble I really hope you get sorted

[Clutter in reply to Hidden]

Birdhouse, we're not permitted to name doctors on the forum without their express permission. You may inform members by private message though. To PM Sammy74 click on her username and click on the orange Send Message button top right of her profile page.

25. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.

healthunlocked.com/thyroidu...

[Hidden in reply to Clutter]

Oh I'm sorry I should have realised . Thanks for advice

[Clutter]

Sammy74, negative thyroid peroxidase antibodies mean you do not have autoimmune thyroid disease. Your TSH, FT4 and FT3 look conclusively euthyroid (normal). It's very unlikely you will get a diagnosis of hypothyroidism in the UK with those results.

Low cortisol and DHEA cause fatigue so supplementing DHEA should improve adrenal function and symptoms.

drmyhill.co.uk/wiki/Adrenal...

Long term diarrhoea may mean you didn't absorb nutrients and may be low in ferritin, vitamin D, B12 and folate. Low levels/deficiency can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. If these weren't among the battery of tests you've had it is worth requesting your GP or specialist tests them.

[Sammy74 in reply to Clutter]

Thanks clutter. Very informative post. Those extra tests were done but I don't have copies. Will ask for them. Thanks again

[greygoose in reply to Sammy74]

Actually, there's another test he should have done - Tgab. They could be high whilst the TPOab is low, meaning you do have Hashi's. besides, one negative test does not completely rule it out because levels vary.

I'm a bit concerned about your diet and exercise... If you are hypo, restricting your calories is not going to make you lose weight. It will probably have the opposite effect. And exercising will use up your T3, and you Don't have that much to begin with. That will make you put on more weight. It's Under mid-range - as is your FT4 - when it should be over. That in itself could make you put on weight. But time will tell. I would suggest you get tested again in a few months and cut down on the exercise!

[Sammy74]

Thanks greygoose. I was actually considering self medicating to see if that would make any difference as the T4 is a bit low...

I am a bit sick of going to drs...

[faith63 in reply to Sammy74]

If you self medicated i would do t3 meds, not t4.

[faith63 in reply to Sammy74]

I agree with Grey.

[faith63]

I don't think your Cortisol is all that low, really. Not enough to cause symptoms..definitely not Addisons. I am surprised the private tests did not do a reverse t3..that might show you that you are not converting your t4 to the active t3, properly.

[Sammy74]

So I was back with my GP last night to get a referral to a different endo who is supposed to be good. The gp was pushing anti depressants...

We were then discussing my history and she revealed that my thyroid test 6 months ago showed a free t3 of 3.8 (4.0 - 8.3)! I am so annoyed with her for not telling me that before. At the time I got referred to an endo and he told me it was all in my head...!

She still wants to give me anti depressants and completely dismissed thyroid....but is sending a referral to the endo....two questions (1) do free t3 levels bounce around a lot? (2) can someone pm me with where to buy t3 without prescription in case the endo won't help me?