Relatively recent diagnosis... looking for some insight

[ArtVandelay]

Hello all,

I'm a 32 year old male who was first diagnosed as Hypothyroid around 18 months ago.

I'd struggled with symptoms from an early age, most noticeably weight gain, and regularly tested as 'borderline' from the ages of 13 until 16 when we (my parents and I), perhaps foolishly, gave up and accepted that maybe I was just a fat child. Fast forward to 18 months ago and, after severe symptoms including a headache for 5 and a half months, a doctor ordered a full set of bloods and diagnosed me with hypothyroidism and started me on 25mcg of Levothyroxine which was increased to 100mcg over the course of 12 months.

I'd always ate well and took regular exercise since struggling with my weight from my pre-teens, but radical dieting, high intensity cardio and, later, the addition of thyroxine, seemed to kickstart my body and I was able to lose around 8 stone in approximately 2 - 2.5 years.

Since April last year, my symptoms seem to have taken on a life of their own. I've gained almost 2 stone in weight, I'm lethargic, severely fatigued, prone to bouts of depression (maybe due to the massive swing in symptoms?) and the brain fog (as I've seen it called on these pages) has worsened. Mental slowness had crept in and bothered me before I recognised any of my symptoms were getting worse, but until I read the words 'brain fog' on this and other thyroid forums, I didn't know how to categorise it. I don't have much in this world, but I've always had my brain and it's frustrating to feel as if I'm losing cognitive function.

I saw a doctor recently to address my worsening symptoms and, after checking TSH, T4 and liver and kidney function (the latter of which had to be repeated), before further investigative blood tests were offered, I was offered counselling and a 'health coach' because maybe I'm stressed or don't realise when I'm eating cake.

I specifically asked for a Free T3 test and after much discussion of budgets, the doctor acquiesced and off I went to have blood drawn.

I received the following results and the doctor has begrudgingly written to an endocrinologist to ask whether he believes I am worth referring. Whilst I'm wary of putting too much faith in the Internet community, I have so little faith in my GPs - I've been passed around and seen/spoken to 6 different GPs at my practice since phoning about my worsening symptoms just over 2 weeks ago - that I'd like to hear some thoughts from fellow sufferers who understand what I'm going through.

Test Results:

Thyroid Function Test:

Serum TSH level: ............................................. 5.3 mu/L

Serum free T4 level: ......................................... 12.9 pmol/L

Serum free T3 level: ........................................ 4.2 pmol/L

Thyroglobulin autoantibodies: ....................... <10 iu/mL

TPO - Anti-Thyroid Peroxidase Antibody: ....... 464 iu/mL

Any feedback/support/advice would be greatly appreciated.

Thank you very much.

Art

[Jodypody]

Tsh is too high to feel well 1.5 is normal as it's what most of the population have. T4 is bottom end and so is T3. Your endo will have a better insight but I would suggest adding T3 as that is the most potent and therefore the most important. It's that that governs your metabolism. Hence the reason everything including cognitive feels sooooo slllloooooow Cos it is

[ArtVandelay in reply to Jodypody]

Thanks, Jodypody. I still don't have an endo, hoping I will get referred to one after this most recent set of results. I'm playing the waiting game and arming myself with helpful information like yours. Thanks again.

[Marz in reply to ArtVandelay]

From what I have read here - Endos rarely have all the answers. They have to keep within the Guidelines of NICE - they lay down the laws and most are on the payroll of Big Pharma. So by keeping us unwell they can prescribe Anti-depressants - statins - blood pressure tablets and so on....all of which oil the wheels of big business.

I am not a Grumpy Grandma - just someone who has been around a while and on this forum for three years. Learnt LOTS

So OK you now know your TSH is too high and should be 1 or under when being treated. Your FT4 should be in the upper quarter and the FT3 in the upper third of the range. You didn't post your ranges which is always helpful as labs vary.

You need to have the following tested - B12 - Ferritin - Folate - Iron - VitD. All need to be OPTIMAL for the T4 to convert into the ACTIVE T3 and for you to feel well. Low B12 will give you brain fog along with loads more problems.

b12deficiency.info/signs-an...

thefatemperor.com/blog/2014...

exeter.ac.uk/news/featuredn...

Lots of reading and listening...keep posting and there will always be someone to help. You can click onto my name and read the edited version of my health history. Most of us have to learn the hard way....

[shaws Administrator in reply to ArtVandelay]

I'm sorry you are unwell. You may have realised that many doctors do not know best how to treat us.

Always have a blood test as early as possible, not having taken levo before it. Take it afterwards. Take levo with a glass of water first thing and don't eat for around an hour as food can interfere.

Always get a print-out from now on with the ranges (labs differ in their ranges) for your own records too and so that you can post for advice.

If you email [e-mail] and ask for a copy of the Pulse online article by Dr Toft and question 6, discuss with your GP, how low our TSH can go in order to be well, even the addition of some T3. Before the blood tests came in we were dosed between 200mcg and 400mcg NDT, nowadays it is much lower to keep us 'within normal' range. That's a big mistake for most of us who rely on doctors knowing something about how best to treat us and many are really disappointed. That's why we have forums like this one, thankfully for many of us.

Your GP knows very little and because the BTA has decided that, before diagnosis the TSH is to reach 10 before medicating, he has got confused. Someone already diagnosed and on levo should come under a different rule, i.e. with treatment our TSH should be around 1 or below or suppressed. Or the addition of some T3 (as you will see from Dr Toft's reply). We have to read and learn to get ourselves well.

Make a new appointment with your GP to discuss Dr Toft's recommendations. Some GPs still refuse to take notice but you can also tell your GP that this site is on NHS Choices.

[ArtVandelay]

Wow! Some amazing responses, thank you so much. For those asking, the lab ranges given are:

Serum TSH: 0.0 - 6.00mu/L

Serum free T4: 10.00 -22.00pmol/L

Serum free T3: 3.6 - 6.4pmol/L

Thyroglobulin: <180.00iu/mL

TPO: <60.00iu/mL

[Marz in reply to ArtVandelay]

...and now for the results of the B12 - Ferritin - Folate - Iron - VitD.....

Happy reading....

[ArtVandelay in reply to Marz]

Getting my doctor to agree to getting blood from me is like getting blood from a stone. I'm thinking I should look at alternative ways to get the rest of these tests done. To the best of my knowledge, I've never been tested for B12, Ferritin, Folate, Iron or VitD.

[Marz in reply to ArtVandelay]

The symptoms of LOW B12 are similar to being Hypo ! If you have read and studied the links I posted earlier you will soon understand the importance of the tests mentioned. They are the building blocks of health. Your GP will not have been trained in preventative medicine as most Medical Schools are now financed by Big Pharma so they only recognise things they can give you drugs for. Any Doc that trained after the 70's does have medicine down to an art form - just a science. The art of diagnosis is a gift.

I guess that is why in many surgeries today - you have a 10 minute slot and only one item can be discussed - usually one that can be sorted with a prescription pronto. It takes time to listen to the patient and join up the dots.

You can have your tests done privately through the main website of Thyroid UK. Money well spent. I live in Crete and I pay for all my tests/scans as I do not have Private Insurance. It is an excellent service here - I can choose the tests the day I walk in without an appointment and then collect the results two days later - all beautifully typed. We keep all our own records - so we are in control of our health. Greece may be bust but there is so much here that is good

The only way to be well is to read and read....and read. Lots of very helpful people here who have shown me the way....

[Marz in reply to ArtVandelay]

it is your legal right to have copies of all your blood tests - so you could ask for them and then check for yourself if the tests have been done.

[Clutter]

Art, my opinion is you are undermedicated. TSH of people on Levothyroxine is usually confortable just above or below 1.0 with FT4 towards or in the top 75% of range. As your FT4 is low, so your FT3 will be as there is insufficient T4 for conversion to T3. There is a synopsis of Dr. Toft's comments to Pulse Online in this link:

thyroiduk.org.uk/tuk/about_...

If your GP won't test vitamins and minerals you can order private tests via thyroiduk.org.uk/tuk/testin...

[silverfox7]

Yes certainly under medicated. An increase of T4 should raise your FT4 and if you are containing well will raise the FT3. That would be shown in a blood test haver an I crease of T4 has stablised. You can help this conversation by making sure the vitamins are optimum and it that doesn't work you may need the addition of some T3 which often doctors are loathe to prescribe either because of the cost or having been told it is dangerous! Being given too much isn't sensible but having something your body isn't producing enough itself is necessary for well being.

[ArtVandelay]

Thank you for all your helpful replies. They're really appreciated. I would've thanked you sooner, but I've been away on business with only a heavily monitored corporate laptop.

I've spoken to my GP today and he still hasn't heard from the Endo he was writing to. He says he'll call and let me know later. I have a horrible feeling I'll get nowhere with this.

If the Endo is not forthcoming with further tests, I'll do as Clutter suggests and get some tests privately performed. At least then I can go fully armed when I change GPs to one which hopefully won't fail me.

[ArtVandelay]

Update: My GP says the Endo said although my autoimmune antibodies are high, that won't be the cause of my symptoms and they're going to up my T4 dose by 25mcg.

I'm going to email an enquiry regarding private blood tests to a Nuffield Health as recommended by Thyroid UK. Can someone please give me a list of the tests I should be asking for?