Update on my frustrations with my Doctor

[Bev69]

Below is part of my original post:

In December after previous higher readings where no action was taken by my GP as I was told I was "borderline" my readings were:

TSH 5.2 ref range (0.2-4.0)

Serum free T4 14.3 (10-20)

TPO 1300 (<100)

I finally had a doctor ring me to say I must go on Levo as I had subclinical hypothyroidism, I had previously put my tiredness and weight gain down to getting old and lazy ! I'm 49

So in Jan I started on 25mg of Levo, I've not felt any better, back for blood test last week and they only tested the TSH this time.

This was now at 2.7 (0.2-04)

UPDATE:

My last blood test came back with a TSH of 2.2, due to the good advice on here I knew for optimal results I should be medicated until I reach around 1.

My only symptoms have been tiredness, weight gain and a sore tongue, advice on here was to also get B12, folate ferritin etc, the folate and ferratin came back slightly high but B12 ok.

So I was ready for the argument that although "in range" surely my Levo could be upped to maybe 75mcg as I didn't feel any different to when I started on 25mcg.

This is my problem, these symptoms could be anything, I do know that, and feel lucky as reading others symptoms on here mine are nothing compared others, my GP said exactly the same, that she wanted to check my liver again, I told her that I had stopped the multivitamin supplements, but she said this wouldn't cause that high a reading.

I persisted that an increase may help, she did not want to do this, she took my pulse which was 80, she said that if I was undermedicated this would be lower, I stated that it has always been high, eventually she agreed to up it to 75 mcg every other day but not until she had discussed it with the other GP's and I have had an ECG.

I have access to my notes online, so I checked last night and although the increase has been agreed the consensus between the GP's is that I'm probably just 'menopausal' !!!

I'm fuming, I had an early menopause at 36 and doubt this would now cause me problems at 49, since I had no symptoms then either, it was just diagnosed by a continual high FSH level and no periods since my teenage years. ( I always took the pill so presumed no periods were due to this).

Thanks for reading my rant, but due to not really having any bad symptoms am I making too much fuss asking for an increase?

[elicarol]

Bev my period stopped all of a sudden my blood work was always in so called range they upped my levo to every other day careful I started heart palpatations put in hospital my cortisol high .They took 3 years playing with my body I had false positive test and finally did blood work 15 days in a row and found out I had a tumor on adrenal gland. Now I was told last week I have cushings from another doctor I am hypo have goiter over 20 nodules and in lungs. Had tumor and adrenal gland removed 2006 and gaining weight and feel horrible very hard to get a proper diagnosis . Read,and get side affects of medicines these endo's only go straight from the book everyone is affected in a different way

[Bev69 in reply to elicarol]

Oh poor you ! You have had a really bad time of it, thanks for your reply, I think that's what I'm scared of, if my Levo is upped and it's unnecessary then I'll end up with palpitations which I don't want, and the GP could be right that it's just getting older that's causing the weight gain x

[elicarol in reply to Bev69]

I haven't taken levo at all for one year.and my levels are in range high testosterone cortisol.They think I have another adrenal tumor or pituitary tumor today all my tests ok .I am sick of it all first problems was in 2002 and to this day I feel horrible no energy sweats from 9 pm to maybe12midnight 3 or 4 times a week tongue hurts on one side .I have chills sometimes. Dr says my one adrenal is providing enough steroid my body needs. the best care I received was from a homeopathic doctor who was the one that did proper blood work everyday and knew what he was doing. If he was near I would go to him Not one doctor since has made me feel any better and its all in my head or mental I have 24 hr home care now and I have other issues from auto accident in94 doctors say im a tough case so many issues I know they just dont know what to do for me any more

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to retest vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Your previous post, you were taking multivitamins, now stopped. So you need to reevaluate where you are

Getting full Thyroid and vitamin testing 6-8 weeks after dose increase

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Only Teva make 75mcg tablet.

You will therefore need 50mcg plus 25mcg tablets

Also you need to check all food you are eating and all ingredients lists for hidden gluten very carefully

When gluten free it does need to be absolutely strictly gluten free

Just carb free doesn't necessarily mean gluten free

[Bev69 in reply to SlowDragon]

Thanks for your reply SlowDragon, I'm going to have to get the private tests done as my GP won't entertain even another TPO antibody test let alone FT4 & 3.

My GP actually said " I'm not here to fine tune your thyroid" !

I do take my Levo 4 hours away from other medication and when I've had blood tests I've delayed my dose till afterwards as I've read to do that on here before.

I don't have any gluten as I'm strictly veg & meat.

I think my main question is do I up my Levo as I'm not very symptomatic or chase the optimal lab result of 1 ?

[SlowDragon Administrator in reply to Bev69]

Getting full Thyroid and vitamin testing is next step after minimum of 6-8 weeks on new dose. Personally I like to wait 8-10 weeks

If vitamins are low getting these optimal can really help thyroid hormones work better

You could test vitamin D now

vitamindtest.org.uk

If vitamin D is under 75nmol start supplementing

Getting other vitamins tested when you retest thyroid

One possible way to help see if you will need further dose increase in Levothyroxine is to test your cholesterol in say 3-4 months

High cholesterol is linked to being under treated

[SeasideSusie Remembering in reply to Bev69]

Bev69

My GP actually said " I'm not here to fine tune your thyroid" !

So she doesn't care that she's not helping you get well? I wonder what she thinks being a doctor means then.

I've had 2 hospital appointments in the last week, for 2 different things. At the one appointment I was treated with the utmost respect, everything was explained to me and discussed. I felt like I mattered. At the other one I saw a supercillious bully who denied I had the problem I'd gone for, questioned that I had been seen on several occasions for the same problem over the years because he had a brand new file for me, no old file which obviously would have been the proof and would have contained my history. Discussion wasn't an option. He made me feel like something he'd trodden in stuck to the bottom of his shoe.

How I wish that all doctors realised that patients contribute to their wages through one form of tax or another. Being respectful and courteous goes a long way, and I keep my end of that bargain, I wish that all doctors did too. I would have loved to have had the chance to leave a review of my consultation, or that there had been a suggestion box!

[shaws]

No, you know better because you've read and been advised that a TSH of 1 or lower is the aim. Maybe give GP a copy of the following:-

thyroiduk.org.uk/tuk/thyroi...

[Shhilo]

Hi Bev,

When I was diagnosed 19 yrs ago, it took months for me to feel anywhere near normal. I was psychologically affected as well as physically. My weight took ages to come off, hair problems, subacious cysts. I was a mess mentally. But about 6 months later I felt 'normal' again, whatever that is.

I hope this helps! Sometimes it takes so long for our bodies to fix themselves, back to something we recognise.

I'm going through similar problems with high Calcium issues etc. I completely feel for you. Everything is my age and menopause which I've by far past.

Best of Luck!

[Bev69]

Hi Shhilo,

Thanks for your reply, I feel bad moaning on here when I hear of everyone else's problems, they're far worse off ☹️ that's the weird thing though, I don't feel "bad" tired and weight gain are my only issues, so I've no measure against feeling normal because I don't feel any different to how I've always felt, I'm putting the tiredness down to having to carry another stone of weight around lol, but for my own piece of mind I think I'm going to get all the private tests done, so I can't be fobbed off by my GP again, as it's really annoying to be told it's menopausal. X