Ta Da!

Went to new GP last week said I was fed up of the continued tiredness, coldness AND (this time) said weight gain & she took bloods there & then.

Just received a letter:

Dear Mrs D

We have a prescription for levothyoxine now ready for collection from the Surgery and would be grateful if you could collect at your convenience

? ta da!

off I trot to collect it... do I need my purse... I wonder if they will explain anything...

feels strange to be 'officially diagnosed' after all these years... perhaps it's just a trial?

22 Replies

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  • Ooh! Congratulations (now that's an odd thing to say, but I'm sure you know what I mean! :) )

    Finally...

    And it almost doesn't matter if it's a starter dose, cos that's an acknowledgement, at last, that it is your thyroid that's the problem. Getting on the treatment ladder seems to be the hardest part.

  • Thank you Jazz - yes it has been quite a struggle to get them to realise it WAS my half a thyroid - not CFS, depression etc.

    Finally, acknowledgement that it's in my neck not in my head! :D

  • Spare, at last, a diagnosis! How much Levothyroxine? I'm afraid you will need your purse until you have completed a medical exemption form which your pharmacist or GP receptionist can give you. Your doctor needs to countersign and send it off. You can reclaim the cost of any scripts you pay for now if you retain your receipts and fill in another form which the pharmacist will give you.

  • The Pharmacist said I get free prescriptions - of course I asked 'Oh is it serious then?' or something, - she said no, Hypothyroidism is very common, fill out this form. 25mcg is a very small dose, GP wants to review in Feb, make an appointment & ring for repeat prescriptions.

    I waited to see if I was told how to take it, what to expect... - no - so Merry Christmas and on my way.... (says one a day before breakfast on the box).

    I asked reception for a leaflet about Hypothyroidism - don't have one (yet!) and I got a printout:

    !TSH 19.79 mu/L (0.35-5.5) free T4 request added by lab

    !FT4 10.7 pmol/L (11-23)

    TSH>=10, BTA guidelines recommend treatment with thyroxine

    All other tests lipids, liver, electrolytes, glucose, haematinic, FBC 'normal no action' except

    !MCH Mean corpusc. haemoglobin 31.6pg (27-31).

    I would really have been in the dark if I hadn't been here for 4½ years! :D

  • Spare, ouch TSH 19.79, no wonder you've felt rotten. I'd have like to see you called back for a blood test earlier than Feb 'cos I don't think 25mcg will do much to lower your TSH or raise your FT4. :( Considering how little information you've been given it's not surprising patients have to turn to Dr. Google is it?

  • Actually this morning I was thinking I haven't heard anything again, so perhaps I am fine. I don't feel as bad as I did a month ago when I made the appointment e.g. going for 3 -4 mile walks at weekends, managing Xmas! (off NDT/T3 since Hallow'een).

    I have felt a lot worse, avoided lots of colds/bugs (so far), not getting any palps either :) .... strange...

    Yes I think 25mcg will only serve to knock out the remaining trickle of my hormone production and won't be enough to replace what I need, but we will see! :D

  • Spare, My TFT is good with FT3 back in range but my vitD is 384 (75-200). I've been self supplementing 5,000iu since March after loading dose to correcting deficiency last year. Endo has said to cut back to 5,000iu once a week and retest in June plus a calcium profile.

  • Wow - that's high, & I've not seen high before!

    Hope you're having K2 (brie) & Magnesium too (Epsom salts), & hope you're not taking calcium - it isn't as good as we're lead to believe!

    I don't supplement Summertime, once I got to 100nmol/l I just have the 3000iu spray when my elbows/wrists tell me :D

    I don't know what a higher MCH means I thought high Hb iron, but think it's an indicator of inflammation/autoimmune (I don't supplement iron, just occasional B12 & multivits).

  • Spare, I haven't had symptoms of vitD toxicity like increased thirst or constipation. I supplement mag and zinc but not calcium or K2. I'll order some K2 in the new year.

  • That's great, looking at your results you need meds really bad. 25mcg is a very very small dose, and you have to wait till february..I would call your GP and ask for an earlier appointment to get your blood tested.

    It will cost time and patience to find the right dose, but this is a beginning.

    Take it 1 hour before breakfast and if you take any supplements make sure it has 4 hours in between. If you get your blood test, always as early as possible and without medication (you can take it right after).

    I'm happy for you, it will get better and you know where your symptoms come from.

  • Thank you for the reassurance Flower. :)

    Luckily I got an early GP appointment 8.30am & she also took bloods (waited 3 weeks to see this particular GP 'tho!).

  • Congratulations! And ..... WHATTTT???!! Tsh 19?! I'm pretty sure you'll go up though starting low is (I think) good to gradually ease your system into it.

  • If it helps, I was tested every 2 weeks during pregnancy and blood results changed quickly so I do think they should be testing more regularly while titrating up from 0. Half life of 10 days so monthly seems reasonable?

  • Thanks Haggisplant - I'll make an appointment for January, I usually have one anyway to discuss the test results, Xmas I suppose - funny how I felt a lot worse when TSH was around 4-5. J :D

  • I'm also at the beginning of treatment. I've got an blood test 2 weeks after taking 25mcg, got an up to 50mcg and now have to wait 4 weeks to test (that will be next monday). I will not wait months everytime, not when my blood shows it's not enough.

  • Thanks Flower - I've not been here before (officially)..

    Hope you are feeling better :D

  • That's good news and I am glad at least that doctor came to her senses. So you will be up and running about over the next few days. A 'starter' dose is 50mcg and 25mcg an incremental dose. Don't mess about if you start to get different symptoms on 25mcg and insist on 50mcg. If our dose is too low we can feel worse.

  • yes the PIL says 50mcg to start - but I only have 28x 25mcg - not even a month's worth...

    going by the book for now, for the record J x

  • my log

    22nd Jan 'review' appointment (1 month on 25mcg levo (MP))

    'So I am hypo then?'.... don't feel much difference still tired, perhaps a bit warmer...

    the BNF recommends 'over 50's' starter dose of 25- she thought it low too, & put up to 50 (Actavis)

    'So what's the plan?'.... up 25 monthly to 75 then after 2 months check bloods in case hyper, I said I know how horrid hyper feels & would lower dose a bit - that's not scientific we will check bloods.... hmm.... & telling me about Hypo (myxoedema) madness - I should read the 1950's paper .. 'amazing' apparently .... hmm...

    23rd Feb appointment

  • Log 2 - 23nd Feb 'review' GP appointment (1 month 50mcg levo (Activis)) 9am so didn't take pill.

    (jittery/agitated all week off, felt down, too tired to sleep. HR around 100 per hubby's phone ap).

    Appt - Very shaky, pulse & BP taken - pause, said 'BP OK', obvious tremor so asked me to hold arms out & said 'she was right to only start me on 25', I explained I was waking earlier to take pill & tremor eases off after. Still cold & tired. Puzzled look. 'Can't increase as planned, symptoms of being overmedicated, Levo has a long half-life, may even reduce dose back down'. I said I've had similar jittery symptoms before. 'Your HR is high, we'll stay at 50, come back in a month for a blood test, too early yet, if you feel worse come back sooner'.

    20th Mar appointment

  • Log 3- stardate unknown (23/3) - survived a ¼ year, current status - on 50mcg levo.

    Visit to bones, pulse taken & BP, bloods, weight - argh!!! Dammit Jim you've gained 4 kg in a month! (wear sandles next time).

    "Your continued weight gain indicates you need more medication" - what? I did say vets dose by weight last time, OK not logical but still, birds aren't tweeting 'cos of lack of sun either = logical?

    "We can adjust after the blood result if necessary" ... que, retrospective treatment?

    "I have no appetite and go for lots of walks ma'am" (nods) -

    "you won't lose weight if you're still hypothyroid" - had to hear that twice!

    "We'll (the royal) just increase to 100mcg" - er.. so I start taking it every other day? or 75 for awhile (as scared her last time into stopping increments, still jittery)

    "No, that must have been a non-thyroid something... " i.e. she'd forgot...

    I didn't have the quickness to say 'like what?'

    Nope just naff off & take 100...come back in 2 months for more indifference (taking 75 for a fortnight first).... feeling pretty fobbed off....

  • Log 4 (11/5) - nearly 6 months since diagnosis - currently on 100mcg levo.

    Not even a how are you. "Not going to increase as your TSH was within range last time on 50mcg (3.84)" - high in range.

    I reported still tired, joint pain - struggle getting out of bath, weak legs - yet feel it is helping and better than b4.

    Pulse (high) weight same - "stable" - my foot! more blood (fasted/no pill)

    I thought a TSH of 1 was normal "no the range is .3 to 5.5". (sideways glance as I'd remembered the figures)

    Now what, come back in 6 months? "Yes, we don't want palpitations and bone thinning" - I muttered already have palpitations thanks Doc, bye....

    well no-one can say I didn't try, better use up my NDT before the sell by date :)

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