Hello, newbie here, writing on behalf of my wife who "allegedly" has had hypothyroidism. The story: Circa 16/17 years ago we had trouble trying for kids and routine blood tests suggested that she had hypothyroidism. This we found odd as if anything she had what we understood to be the complete opposite symptoms wise. Perfect figure, bags of energy, never tired. Anyway with the wanting kids thing (you try anything) she was put on Levothyroxine. Within a few months she felt "rough" and very quickly went from 9st to 11st which she has struggled to lose ever since. The thyroid function we were told was the reason we couldn't get pregnant but seemingly wasn't. Subsequently we had two rounds of IVF 8 years apart and fell pregnant both times (now have two great kids). All this time she was on the L.thyroxine. As of now she has been long term taking 100uG daily with regular blood tests. Still not able to lose weight, no energy and tired all the time. Mentioning this to our GP and attempts to up the dose to 125uG daily gave heart palpatations so back down to 100uG. One day a locum GP was there who referred her to an endocronologist who was a friend.
After more blood tests she was put on T3 in addition to the Levothyroxine but this made her feel as though her heart was stopping and short of breath. She only did this for about a week as it made her feel so ill. According however to the endocronologist she was now "perfect" according to blood tests - she was not!
So back to 100uG. The only alternative he offered was to go on Armour Thyroid on a private prescription. We were initially quoted £115 in Feb this year for 3 months supply. Money being tight we left getting the Armour until now. Ordering from Lloyds chemist and having been assured the price would only have gone up by a few pounds on collecting them today the figure was £274 for the 3 months supply!
Any helpful comments as to the diagnosis etc and alternative sources would be much appreciated!
BTW, her father who is 82 WAS diagnosed 2 years ago by a routine blood test with hypothyroidism and told to take L.thyroxine. As he had NO SYMPTOMS and was VERY FIT my wife advised him NOT to. They monitored him over the course of two years again telling him he needed the drug. Recently its come back to their "normal" which amazed the GP. Is it a failing on their part or just maybe a family trait that they show seeming low thyroid function which is in fact normal for them. BTW for the last 3 years her dad has done a 7 lap sponsored bike ride around Brands Hatch with our 14 year old and takes NO DRUGS for any ailment and has a cholesterol of 4, chops wood every day for a wood burning fire and does not stop all day!
With hindsight my wife would NEVER have taken the stuff.
Thanks in advance.
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paucon
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Just two things : do you have copies of your wife's blood test results? You should always ask for a copy, with ranges, for your own personal information and records. What doctors think of as 'normal' very often isn't for the person concerned. Often people have found a whole other story when they've got hold of their records and results.
And secondly, were antibodies tested with either your wife or her father. If they were found to have Hashimoto's, that could account for a lot.
But how is she doing on the Armour? Is she finding it better than the levo? A lot of people don't get on with levo and need a different approach.
No we don't have the test results. Our GP surgery s just going through a major re-shuffle and is tbh a shambles at the moment. May look into getting them. If we get them and scan and post up are there those on here that could interpret them maybe?
I have never heard of Hashimoto's so will be looking that up!
She's only just started the Armour today.............still getting over the shock of the cost. Not something we can afford tbh for her to take long term.
I suggested she stop taking the Levothyroxine altogether, gradually reducing the dose...........anyone done this?
Hi Paucon , I have just sent you a private message about a more affordable Armour supply . When I changed over from thyroxine to Armour I stopped thyroxine one day and started on Armour the next day . There is lots of advice on the stop the thyroid madness website about how to take and gradually increase dosage , also it has "common mistakes made by people as they try to find there best dose " . I found it invaluable . The calculation to use to make a comparison is below
1 grain of armour = 38 mcg of T4 and 9 mcg of T3 .
HOWEVER T3 IS 4 TIMES AS STRONG AS T4
THEREFORE 1 grain Armour = 38 mcg of T4(thyroxin)
9 mcg T3 (9x4=36)
So 1 grain Armour is equivalent to 74mcg of thyroxine .
I take mine by the circadian rythm method . 1/2 grain approx 3 hours before normal waking time , 1/2 grain 2 to 4 hours after getting up as i feel the need .
( documented in Paul Robinsons book recovering with T3 ,he has a website too . )
When I started Armour under the care of an endo he took me off Levothyroxine completely . No medication for two weeks and then started Armour very slowly increasing dose . I don't think she should be taking both together
There are plenty of people here who can interpret the results. Getting them is really the way to go, the first step. But do make sure you get the ranges, otherwise it's impossible to interpret them.
So what did the endo say about the Armour? Some people go cold turkey and change all in one go, some gradually reduce the levo and up the Armour, some continue to take a bit of levo with their Armour. Personally, I did the gradual method and I regret it. The change over didn't go as well as hoped, and I wish I'd gone cold turkey - which is my usual way of doing things! lol
Hashimoto's is an autoimune disease where the immune system mistakenly attacks the thyroid. The gland is gradually destroyed and bits fall off producing what we call Hashi's swings, where people go from hypo to normal to hyper and back again. The frequency and duration of the swings is highly individual but I sincerely believe that these swings cause some people to believe their Hashi's is cured because their bloods are in range. But how long that normal phase will last is anybodies guess.
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Hello greygoose, I have noticed your remarks above and was wondering if my thyroid was in the swing. Had Hypofor 18 years and only given Levothyroxine. Not long ago I wa TSH 2 now TSH 0.08 Free T4 21 pmol/L (9 -24). It actually says on the print out below range. Fighting to get T3's done as the lab keep messing up. Keep hounding GP to get back to me to get them done. The lab said do not need to test as she is not on T3, and would need a seperate form to do it from Doc. This is the second time it has happened. All I have had over the last 18 years is up to 100mcg, 125mcg currently 150mcg. I just know from all my symptoms, weight gain, depression, aches (seen neuro last week and ordering MRI scan on arm and neck). I know I need to see if my T3 is working (T4 converting over), but they are all usesless. Please could you advice would be gratefull.
Sorry, I'm a bit woolly-headed this morning, but which one did it say was below range? I'm afraid I don't really undersatnd what your question is. The fact that the TSH is suppressed means absolutely nothing. You are on thyroid hormone replacement so the link with the pituitary is broken and TSH no-longer accurately reflects thyroid status. A suppressed TSH in no way, shape or form means, in itself, that you are hyper.
However, a lot of people find that having a depressed TSH eliminates the Hashi's swings. I know that is controversial, but it works for many people. So you're probably best off with it suppressed.
However, you are perfectly right that you need to see your FT3 to see if you're converting. The fact that you have a relatively high T4 but still have symptoms suggests that you aren't. Have you considered having it done privately, because it would appear to be more and more difficult to get it done on the NHS.
Hugs, Grey
I have sent you a private message about prices of armour.your wife is paying far too much.
Hello, just a little update ref my wife's alleged "hypothyroidism". Can't believe it's 3 years since I posted on here. Simply put she's off L.thyroxine . Things were a bit manic and she kept putting off renewing her prescription until "tomorrow". After a few days as she felt OK she didn't renew it. So from taking 100uG a L.thyroxine now she takes nothing. (She did it cold turkey btw with no ill effects). She's lost over a stone, her skin's better and her energy level's are up and she's not always tired. And to think we were told that she would be on it for life and that to come off it would be dangerous. We firmly believe the original diagnosis was wrong and that here baseline is simply lower than what's considered "normal".
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