I'm new here: What should I be asking/telling my Dr? I am at my wits end.

[Minny69]

Dear all, apologies in advance if this is a rambling post. I hope it makes sense.

I have reached the point where I feel like I am hitting my head against a brick wall. I do have a good GP who I've been with for quite a long time. I have suffered depression/PTSD for most of my adult life. I think the problem with this is everything gets blamed on depression and stress. The thing is I feel as if something else is going on. I will give a brief account of what is going on:

I am tired most of the time I have very little energy. I will struggle out of bed and manage to walk the dogs and then I am completely exhausted . I have been seeing a naturopath Dr who suggested I take my temperature each morning and over the last two months and the highest it's been is 35.1 most mornings it is the 34 mark, I don't know if this is considered low? He thinks I have problems with adrenals, possible thyroid? I am in constant pain in random places over my body, lower back, neck, shoulder. I am always cold. If you read thyroid list I have pretty much everything apart from weight gain (something to be grateful for).

I am under pain clinic and am waiting to see consultant again but that could be a 2-3 month wait. In the meantime they want me to get blood test with my Dr especially for B12 because during the night I have this strange thing where various parts of my body randomly kick out as if someone has hit a reflex point? Also Vit D. I don't think I will be deficient in these because I do supplement during winter with Vit D and last time I had bloods (Nov 2016) Vit d & B12 were high.

As I said my last blood test was November 2016 when I did think it could be my thyroid then but it all came back normal! TSH 2.19 and FreeT4 13.6. I have had borderline results in the past but then they normalise again. I am at the end of my tether. I am 48 years old and feel more like 80.

If you have read this far thank you. Any thoughts of what could be going on or what I could do or try.

Many many thanks

Minny

[Greybeard]

When you have a thyroid function test it is very important that the blood draw is done as early as possible, before 9am is best, most of us don't eat or drink anything but water in the morning before the test. Thyroid hormones have a daily rhythm and the hormone they take most notice of tsh, drops off as the day progresses, you need it to be high for treatment to begin. There is a b vitamin called biotin that can effect the test, if your take this or it is in things like your shampoo it needs to be excluded for maybe 5 days before the test.

[Minny69 in reply to Greybeard]

Thank you so much for that. I never knew that and it makes sense. All my tests have been at about 4pm so good information.

Thanks

[Marz]

Have your had Anti-TPO and Anti-Tg tested ? They are thyroid anti-bodies and need testing so you can rule out Hashimotos - which can be a possible cause of all over body pain.

Your FT4 looks low in range - even without the ranges !

[Minny69 in reply to Marz]

Thanks Marz can you get them on MGS or will I go private. In the past free T4 has been below range but tag normal. What does that mean?

Thank you for replying

[Marz in reply to Minny69]

The NHS can test for TPO but not Tg - you need both. Are you able to have Private Testing done through Thyroid UK ? See link below ...

thyroiduk.org.uk/tuk/testin...

Not sure I know what you mean about the T4. The result needs to be nearer the top of the range - what was the range ?

What is MGS - do you mean NHS ?

[Minny69 in reply to Marz]

I am sorry I was typing from my phone! I meant NHS!

[Marz in reply to Minny69]

No worries !

[Hidden]

To get an accurate picture of what's going on with your thyroid you need to have your FT3 (active) levels checked plus reverse T3 (inactive). When the body is under stress it can convert your T4 into the inactive rT3 so it may be worthwhile having those done, but not sure the NHS would be compliant with a request as your TSH is within normal range.

I think your Naturopathic doctor is probably right, your adrenals may be playing a big part in how you feel and I think it would be a good idea to get the Saliva cortisol test which measures cortisol at 4 times throughout the day. Cortisol also has an affect on body temperature.

Was your B12 high in your last test because you supplement?

[Minny69 in reply to Hidden]

Thank you for your reply Caddie yes at that time I was supplementing but am not now.

[greygoose in reply to Minny69]

No point in getting your rT3 tested. It's a very expensive test and doesn't give you any useful information. It just tells you there is a problem somewhere, but doesn't tell you where it is, nor what to do about it. Really not worth bothering with. FT4 and FT3 are the most important numbers, along with antibodies.

[marsaday]

Your waking temp is very low. So your metabolic rate is slow.

A low waking temp for me is 36.2 c and under. Ideally you want to be 36.6c according to broad Barnes (google his temp info).

So yes I would say some thyroid meds would be a help but it maybe more complicated than just providing a bit more hormonal energy this way.

Ft4 is lower in range but you need to get ft3 done as well privately.

[shaws]

If you can afford a private blood test we have two labs who do all of the necessary ones and they are home pin-prick tests. If you decide you must be well hydrated a couple of days before blood draw. It should be at the earliest and if you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards and arms/hands should be warm .

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

GP should test B12, Vit D, iron, ferritin and folate.

Medichecks and Blue Horizon are the labs:-

thyroiduk.org.uk/tuk/testin...

If hypo and we have a low T3, it can cause various unpleasant symptoms but T3 is rarely tested.

webmd.com/women/guide/hypot...

[Minny69 in reply to shaws]

Hi Shaws I have got my results back, I don't know if I should just add it on to the end of this post? I didn't want it to get missed so that's the reason I am replying to you hope that is ok.

It seems all my results are normal. My Doctor did request T3 but no result so far has come back from that but I only had the blood taken on Thursday. The only thing that came back a bit low was my total white cell count which was 3.98. Here are all my other results:

TSH - 2.98

T4 - 16.2

Peroxidase antibody level - 33

Ferritin - 30

Folate - 30

B12 - 416

Vit D 98

I think they all seem normal so I have not got a clue what is causing my mysterious symptoms.

Thanks for all your help

[shaws in reply to Minny69]

Minny69, you need also to put the ranges for your results. Ranges are in brackets and important. I would put them in a fresh post as you will get more answers.

On this link you will see it will be beneficial if you can get a Free T4 and Free T3 probably private. We have two labs.

thyroiduk.org.uk/tuk/testin...

[Minny69 in reply to shaws]

Ok thank you

[Minny69]

Thank you all for your replies all very helpful. I will see what tests GP will do first and then look at getting T3 done privately.

Is it common practice for people to get T3 test done privately then got to the GP with the results? What is the protocol? I don't really want to upset anyone but I am sick of being sick and not getting anywhere.

Also can something be wrong if you have a normal TSH and low Free T4?

Thanks

[greygoose in reply to Minny69]

Never mind about upsetting people! This is your life we're talking about! If doctors have delicate egos, that is their problem!

You most certainly can take your private tests to the doctor, but it depends on the individual whether he takes any notice or not. Some do, some don't.

I'm afraid you don't have a 'normal' TSH. Your TSH is too high, and shows that your thyroid is struggling. But, as Greybeard says, it does depend what time you have it tested. If you'd tested it at 8 am, you would probably have had a TSH of over 3, which is hypo. Although your doctor probably would not agree because, in the UK, they like it to go over 10 before they will diagnose! But, in the real world, you are hypo when your TSH hits 3. Besides, your last test was 18 months ago. It could be a lot higher by now!

[Minny69]

Is it common for people to self medicate?

Please can anyone PM me of where to buy medication from.

Obviously I will wait till I get all my test results back but I think if I come back "borderline" again and Dr refuses treatment, I feel like I am left with no option but to try and self medicate. I know for sure I can't go on feeling this rubbish. Can it do any harm trying medication to see if it improves my symptoms?

Thank you again and I will update once I get my results

[DippyDame in reply to Minny69]

Hello Minny69

I too was feeling rubbish and barely able to function - my health had been gradually declining for a long time - when I turned to the amazing people here and I am now recovering well, but still not quite there yet. This is what I did, hope it helps even a little.

Have an early morning test as advised

Post your results, including ref. ranges. Start a new post, few people will see them on this one.

People here will analyse them, this will tell you how well, or not, your thyroid is functioning and whether you are adequately converting T4 to T3

Your nutrient levels may be low, this also affects thyroid function - use the search facility beside your avatar at the top of the page to find out from previous posts about this

Only then, armed with that knowledge can you safely start thinking about what treatment may be best.

Again, people here will advise - do not self medicate before this point Listen to/follow their advice carefully

I now self medicate but not before ensuring the basics had been addressed. It turned out that I do not convert well and require T3 which I buy from abroad.

You may not need to self medicate, your GP may prescribe Levothyroxine (T4) which is what many hypos do well on. but if it turns out from advice offered here that you need to source T3 then post a question asking for sources and somebody will PM you with those.

There is no quick fix however and you will need to be patient (not easy I know) and determined to stick with it.

You are in safe hands here....I can vouch for that!

Sadly GPs lack extensive knowledge about the thyroid....if they did then I guess this forum may not exist!

I had to take my courage in both hands and give up hope of effective treatment from my otherwise lovely GP, now that my treatment is getting under control I intend to discuss my journey with her. She will see a different patient to the one (slumped in a chair and at the end of her tether) who visited her surgery last autumn!

GPs are there to advise, not to dictate and ultimately it's your body and you need to take charge of improving your health.

Good luck

Best...

DD