help diagnosed and undiagnosed hypo in less than 10 days

[mandy72]

2011 i had a blood test to see what was causing a bad skin breakout of boils (hidradenitis) and my thyroid came back high but dr wasnt concerned, asked for another blood test couple of weeks ago due to massive weight gain, tired, irratable, lack of energy ect

results came back 10.1 and i needed to see a dr.......was told i have hypothyroidism and was prescribed 25mcg levothyroxine, after 5 days my feet started swelling bad and i wasnt sure if it was the meds or heat so yesterday (day 9) i called dr for advice, i spoke to a differant dr as the one dealing with me is on holiday and was told to stop the levothyroxine as my thyroid was fine and the swelling was more than likely due to the heat wave we are having at the moment,

now im really confused i dont understand the 10.1 so am i hypo or not? should i have been given medication? should it have been stopped?

[Angel_of_the_North]

If 10.1 was your TSH (and I expect it was) with your symptoms, you are hypo. The trouble with such a low starting dose of thyroxine is that your body can be so desperate for it that it sucks it up and wants more, then you feel worse (although that usually takes a bit longer than a week). Your body also can't use it properly unless you have enough iron and selenium (liver and brazil nuts?). Not sure about foot swelling, but ankle swelling and burning feet are hypo symptoms.

Did the doc tell you to be sure to take thyroxine on its own, away from tea, coffee or meals or anything containing calcium?

[mandy72 in reply to Angel_of_the_North]

yes 10.1 is my TSH, i took them 9.30 every evening as i have coffee in the morning and energy drinks throughout the day (waste of time as they did nothing)

not sure what my iron and selenium levels are but i can cope with brazil nuts but no way can i touch liver, could i take an OTC iron supplement to help maybe in the morning?

doc said she would start me on the lowest and then go back for more bloods in 8 weeks then adjust dose

[PinkNinja in reply to mandy72]

You could take an iron supplement if your iron is not high and if your ferritin is below 70. You would need blood tests to find this out.

If your TSH was 10.1 you are hypothyroid and your thyroxine shouldn't have been stopped, it should have been increased. The swelling could be the heat but it could also be the hypothyroidism or a combination of both. Hypos often don't cope well with the heat

25mcg is low starting dose. The normal starting dose is 50mcg unless you are over 60 or have a heart condition (and perhaps certain other conditions). I suggest you make an appointment asap with your original doctor about this.

And avoid the energy drinks! They are probably doing you more harm than good in the long run. If you are tired, take a nap if you can and try to eat healthily and take gentle exercise (like walking). This really is the best way to recover. Relying on energy drinks can make everything worse. You also need to get your thyroid treated. Many other countries treat hypothyroidism once TSH is above 3. Yours is above 10! It needs treating.

I hope you get the treatment you clearly need.

Carolyn x

[mandy72 in reply to PinkNinja]

ill ask if my iron ect was checked

im going to see the dr that stopped the meds monday and demand an explanation as to why she said my levels were normal

may see about an ecg to rule out heart with swelling as have history on my mum and dads side

ill try and avoid the energy drinks, as for walking i dont do much of that i feel like im the laziest person on earth some days, i get up get kids to school and pretty much sit all day, its a huge effort just to get up and nip to the toilet, ive put on tonnes of weight and gone up 3 dress sizes so that dont help much

hopefully ill get some answers monday

thanks for the help, ill deffinatly keep you posted

[nostoneunturned in reply to mandy72]

Don't beat yourself up, you are NOT a lazy person, you are hypothyroid and in need of treatment. I am so sorry for your suffering, compunded by GPs who know less than nothing. Please know that you are entitled to copies of blood tests, just ask GP, then you can post results accurately with the vital ranges.

Iron from diet is termed heme, from animal sources, or non-heme, from plant sources. If you cannot tolerate liver then see how you get on with black strap molasses, from any health shop, and/or Spatone from chemists.

Chicken livers OK? Makes great pates (English speaking keyboards don't do accents).

Have you browsed through the main site?

thyroiduk.org

Lots of useful information there

[Angel_of_the_North in reply to nostoneunturned]

Pâté P ALT+0226 (on numpad) t ALT+0233 (on numpad)

Always a nerd around if you look hard enough

[nostoneunturned in reply to Angel_of_the_North]

Thanks!

[mandy72 in reply to nostoneunturned]

hi is this the right black strap molasses

hawthornhealth.com/general-...

thanks

[nostoneunturned in reply to mandy72]

Your link, oddly enough, took me to some chocolate power bar....but the molasses I use is the Meridian 740g Organic blackstrap molasses, formerly £2.79, the search box in Hawthorn Health took me to it.

Great firm, thanks for letting me know about it. I sincerely hope you get the treatment you so obviously need,

[mandy72 in reply to nostoneunturned]

i couldnt believe the price there i ordered 3 tubs just waiting for it to arrive now, i popped in holland and barrett and got just meridian natural molasses pure cane, not sure if its the right stuff but tried a teaspoonful straight from the jar and it tasted lovely, if its the wrong stuff it can be used in cooking ect. How much is the daily dose? i looked at the spatone and that was pretty pricey in tesco

[nostoneunturned in reply to mandy72]

Hi Mandy, the molasses you are waiting for from Hawthorn Health has the right organic stuff, packs a punch as to taste. Dose? Just a couple of level dessertspoons daily is my level, it can be used as a spread, lovely, or diluted as a hot drink, in my opinion, not so lovely; dissolved in hot milk, or start off dissolving in a little hot milk and then finish off with cold milk, or just eaten off the spoon. You cannot overdose on it as the body can always deal with natural diet acquired minerals but not so readily with minerals from supplements. Molasses is packed with valuable minerals, just google minerals in molasses. and you will see, it will be far better than any energy drink I bet, if you compare the ingredients. i hope the energy drinks did not contain artificial sweeteners as they really mess things up, but you are free of them now.

Have you checked out the main site's advice on chemicals/foods/etc to avoid? Main site is here:

thyroiduk.org

[mandy72 in reply to nostoneunturned]

i expect ill eat straight off the spoon, have a very sweet tooth so hopefully that will stop the cravings for cakes ect

ill go take a look now

thanks

[mandy72 in reply to nostoneunturned]

im on the page............where abouts do i look? thanks

[PinkNinja in reply to mandy72]

I agree with everything nostoneunturned said. You are NOT lazy. You are suffering from a horrible, and often debilitating disease, that needs treating properly.

I take spatone. It suits me where iron tablets do not. It seems to get my iron up reasonably quickly too.

Please let us know how you get on.

Carolyn x

[Angel_of_the_North in reply to mandy72]

Under-treated hypo contributes to heart problems, so there is good reason to get your meds back and probably raised. You can take an iron supplement - lots of people like spatone or Floradix as they are gentle - the liver was really a joke, although my cat loves it (I'm a veggie!)

[mandy72]

thanks everyone, so much easier knowing theres support from sufferers rather than a dr who knows nothing

ill look in the black strap molasses and spatone as theres no way i can even begin to imagine swallowing liver, i started back on the tablets last night, allso seriously considering making a formal complaint about this dr especially with heart conditions running in my family, hopefully will get dosage adjusted as soon as the other dr is back off holiday unless i go see another thats not dealing with me and hope they listen

[shaws in reply to mandy72]

I am not sure how much training a GP undergoes nowadays but I don't think it is very long. Before the blood tests doctors were trained in clinical symptoms and people were thus treated. GP's/Endos have been taught that the TSH is the 'exquisite' test for thyroid gland conditions. Clinical symptoms should also be considered. On your next blood test ask for Vit B12, Vit D, iron, ferrtin and folate and the first two are often deficient.

I hope you feel better soon, many do well on levo once on a dose which makes them well.

Best wishes

[shaws]

Do not stop your medication with a TSH of 10. It is not surprising to me anymore that GP's just do NOT know how best to treat us. The aim is to get a TSH of 1 or below (not within reference range as many GP's think).

A starting dose is usually 50mcg with a blood test around 4/6 weeks later and meds increased till your TSH is 1 or below. This link informs you of the reaction of too low a dose and cursor to the question dated November 20, 2002.

web.archive.org/web/2010112...

It is a pity but we have to read and learn as much as possible in order to get well. If we have a helpful GP it is a godsend. If not we have to research otherwise our lives can be ruined by continuing ill-health.

[mandy72 in reply to shaws]

ive just had a read through and i think im going to make appointment tomorrow with a dr hopefully one that is on my side and ask for higher dose and if they refuse ill tell them i will start taking 2x25mcg a day and hope things improve

i know its early days but i was saying to hubby the other day things seem to be worse since starting the meds

[shaws in reply to mandy72]

I had a TSH of 100 initially and the Professor I saw said I should have been on 50mcg to start not 25mcg. I suppose your GP is cautious. I felt worse initially when I first started thyroid meds. Always try to get the same levo as fillers/binders may be different. After a while with no improvement you can try another make. If you take your meds at bedtime, don't have anything to eat 2 hours before you take them as food interferes with the uptake. Take with a glass of water so that it goes directly into your stomach.

Unfortunately, it is a slow progress to get to a dose which makes you well, but it is possible.