Help from a confused newly diagnosed

[Robowagen]

Hi, I am male & 43 and my GP has been monitoring my thyroid function 6 monthly for the last 3/4 years without me really paying much attention other than being told each time its slightly raised and to return again in 6 months for a re-test.

So at the beginning of this year (2017) I switched a 20 a day smoking habit to electronic vaping in January & have since not touched a cigarette & now only use a very low dose of nicotine in my vaping e juice.

Then in May I joined slimming world to support my wife after years of her yo-yo dieting and have successfully lost over 2 stone in weight and even been taken off the medication I had been on for approximately 6 years treating high blood pressure after slowly lowering the dose myself.

So although I've lost weight and am generally healthy I was still feeling lethargic, always tired and lacked any get up and go which I'd previously put down to my generally unhealthy lifestyle. But after giving up the cigs, loosing weight I find myself suffering bouts of extreme tiredness even more than before, the feeling as if I can't swallow my food & generally unwell to be informed by my doctor that I have Sub-Hypothyroidism & that it has been up and down between 4.5 & 6.5 he then shows me the reading on the screen with the other a higher reading he tells me is a little low.

Your going to ask a string of questions but I have no idea what all this is and I have no idea what tests I should be having or not having etc.

Anyway I was given the option to continue monitoring or to start medication which is 25mcg of levothyroxine which I have now been taking for 5/6 weeks & was booked in for blood tests & review later this month.

So in my ignorance I have been taking the tablets as instructed first thing in the morning & waiting 1 hr before eating or having my morning coffee, this has gone well with nothing to report really except that is until I started a couple of weeks ago with a headache which is like a tired headache but constant it goes off with a couple of paracetamol but you know its still there just surpressed, I've also been waking numerous times in the night feeling as if I haven't slept in between then when I get up I feel exhausted all day, very little energy.

I took the earliest doctors appointment Yesterday and told him that if this continues I shall take myself off the tablets because I don't want to ruin christmas for my wife & kids by feeling this way thinking I'm suffering some kind of side effect but he's persuaded me to continue but bring forward my blood tests so they can see if the Levo is helping.

I have managed to obtain a cancellation tomorrow morning but have been reading up on this very informative site that I should be having maybe other tests for vitamins and antibodies etc. can anyone tell me exactly what I need to ask / insist that they test for & I shall ensure I get all my results to share as there is alot of experience & knowledge on here which may help.

Oh the other thing is that my normal weight loss experienced prior to starting the Levo has stopped, I am still following the slimming world plan which is not a diet but more a lifestyle change and im worried the medication is effecting the weight loss although the doctor I spoke to this week said this wasn't the case.

I'm at my wits end and almost wished I hadn't started the Levo & getting no real support from my GP seems to be the norm from what I have read on here so I want to go armed to the blood test ensuring I request all the right tests & then at my follow up appointment with the better GP at the practise next week I want to be armed with all the info and relevant questions I need answering etc.

Sorry for such a massive post & I hope you have managed to read through to this point.

Thank you in advance for your assistance.

Dave Robo...

[shaws]

Welcome to our forum and am sorry you have hypothyroidism. The majority who develop hypo are women but we have some male members. 25mcg levothyroxine is a supplemental dose. We normally start at 50mcg with blood tests every six weeks and follow the procedure below. That's probably why you don't feel so good.

Ask GP to test TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. In the UK most times we only get a TSH and T4 which doesn't give enough information. Also request Vitamin B12, Vit D, iron, ferritin and folate.

The test has to be at the earliest possible, fasting, and allow a gap of 24 hours between last dose and test and take afterwards. Hypothyroidism causes our metabolism to slow down, so much so that weight can be gained and it is the most common post.

If your GP wont do all of the thyroid hormone tests, you can get the others privately from one of our recommended labs (there are two labs on our list) and they are pin-prick tests so make sure you are well hydrated a couple of days before.

Get a print-out of your results with the ranges and put them on a new Post for comments.

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

[Robowagen in reply to shaws]

Thank you for the timely response I have printed it so I can digest & ensure I raise the additional tests tomorrow with the nurse & if she can't sort I shall be fully armed when I see the doctor next week.

I do have private health cover through work which I may be able to use for investigation & testing through to full diagnosis & will ask for a referral if the GP is not prepared to see this through properly & thoroughly.

Thanks again,

Dave Robo...

[bluebug in reply to Robowagen]

Even though you have private cover, paying for the tests yourself may end up being quicker and cheaper. This includes if you decide to go down the going to a phlebotomy clinic route. The private providers recommended actually use the same labs as the NHS but in this case the labs are doing private work.

Also many doctors including specialists and nurses are ignorant on the intricacies of chronic diseases including hypothyroidism so a support group like this is actually more helpful. Just remember the majority of private doctors also work in the NHS. So unless they are from a list of recommended endos they won't know any more than normal e.g. many say testing Free T3 is pointless, and all going private will do is enable to see them quicker.

[Robowagen in reply to bluebug]

The private cover we have was very good when my wife needed to see a gynae who specialises in hormones, they sent us down to Surrey so I'm confident they would be able to assist if I draw a blank with my Dr.

[shaws in reply to Robowagen]

If you want a private consultation with a sympathetic doctor/endo, email [e-mail] who has a list.

[Robowagen in reply to shaws]

Thank you I shall keep that in mind.

[Robowagen]

Quick update I had a call to say the nurse had called in sick today & I was insistent that these tests could not wait until the new year so they booked me in with the nurse practitioner.

I attended the appointment & she took one vile of blood but whilst talking to her & informed her that in my quest to educate myself about the condition I had found this site & that I had been informed that a clear picture of whats happening could not be achieved on the standard tests to which she informed me that she could order the additional test & that more blood was needed. She took another vile of blood from the other arm I was so surprised I forgot to ask specifically what the additional test were so I'm just hoping they cover all the ones listed by Shaws.

Fingers crossed in a couple of days I can share the results and obtain some opinions and advise prior to my next GP appointment.

Thanks, Robo.

[shaws in reply to Robowagen]

Crossed fingers

[Robowagen]

Just checked online & my results are back for the standard Thyroid Function Test

Serum free T4 level 14 pmol/L [9 - 25]

Serum TSH level 4.2 miu/L [0.3 - 5]

Annoyingly it also states: -

Thyroid function test Report, Normal, No Further Action (Patient Informed) Which I haven't!

The other test listed appears to be outstanding: -

Thyroid peroxidase antibody (Requested)

Does the other test normally take longer & does anyone know if it's just the thyroid antibody thats been requested?

[Robowagen]

I addition to the above T4 & TSH results the Thyroid Antibody test has returned which is

58 iu/mL (<60)

Obviously the comment on the test results was marked as 'Normal' but just because its in range does that make it normal?

Prior to this test result landing I had a doctors appointment yesterday where we discussed how grim I've been feeling since starting on the Levo, she seemed quite surprised that I was feeling any side effects on such a low dose but I have no other explanation as I was not suffering like this before.

However she agreed that there is something going on and that a broader range of blood tests needed doing so I said sure as long as you include these & whipped out my bit of paper with the tests advised in Shaw's post, thank you Shaw.

We agreed to stop the Levo as my recent TSH result of 4.2 (0.3-5) was normal to see if what I'm currently experiencing subsides, if I feel even worse I'm to start taking the Levo again.

I feel like we have taken a step back but I'm thinking if I get all the results back then hopefully it will give a clearer picture of whats going on.

Thanks,