Don't no were to turn: Iv been on levothyroxine... - Thyroid UK

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Don't no were to turn

mackey930 profile image
5 Replies

Iv been on levothyroxine for three months between 75 mcg and 100mcg it was painful 2 say the least heart population s .chest pains . Feeling uthoric. Just very unwell.went 2 c the endo he gave me eltroxin witch I took..still had all the symptoms so started experimenting by dropping 5 mcg at a time got to 70mcg and felt a hole lot better..for to days... now goin back 2 feeling just awful but not to much pain..need advice because doctors seems to look at u like ur stupid with no help or advice?????

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mackey930
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5 Replies
shaws profile image
shawsAdministrator

As Martin says, 75mcg may have been too high a starting dose. Usually it is 50mcg to start and then about every 4 to 6 weeks it rises by 25mcg till you feel better.

I would (I am not medically qualified) drop your dose down and build up gradually.

Did your GP do another blood test before you took the 100mcg? If not get another thyroid gland blood test. Post your results here complete with the ranges (figures in brackets as labs differ) so that someone can make a comment upon them.

Some people have difficulties with levothyroxine but many do fine when they get to a dose which makes them feel better.

mackey930 profile image
mackey930

Thanks for the reply. .was at doctors all the time they were pushing me towards 100mcg even tho I was telling them it was crippling me .he said take 75mcg 1 day and 100 the next.im goin 2 get blood s done Monday and il post them..and iv made me mind up goin 2 change me doctors because they r useless. .Thanks

tettridge profile image
tettridge

Hi

I have had my thyroid removed (about seven years ago now) and I am only on 150 microgram of Levothyroxine Sodium each morning. this probably makes no difference as everyone is different but thought it might be worth mentioning.

I am still trying to find out the best time of day to take them as I have read those with one type has shown better results by taking them in the evening. Trouble is I can find no research for those without the thyroid, I will keep on looking

Kindest regards and take care

Terry

marram profile image
marram in reply totettridge

Hi there tettridge, I am like you, total thyroidectomy about 31 years ago now. I was on 150mcg Levo for years but a relocation and change of doctor was disastrous for me, he did the dreaded TSH and announced (amazingly) that my thyroid must have started working again as I was overmedicated, my TSH was too low. In my ignorance I took his word for it. I now have put on huge amount of weight, heart enlarged, sky-high cholesterol - you know, all the usual joys which hypothyroidism (or, as in our case, athyreotism -?) brings to the body.

Eventually after finding this forum I got the courage to challenge him.

I totally lost it at one point because he kept telling me my thyroid was 'fine'.. I sarcastically asked if he had seen it lately as I hadn't, but was pleased to hear it was OK -wherever it was!

I had a blazing - er - discussion with him in December because I was so ill, so he has reluctantly agreed to restore the dose. I was not 100% on 150 but at least I was functioning, holding down a job and caring for my disable hubby as well. I hope that by about May I will be at least where I was before. Then I shall review the situation.

There has been some research which suggests that theose without a thyroid should really have T3 as well, but right now I am happy to takw what I can get and don't want to rock the boat too much. We'll see what the furure holds!

Meanwhile, have a look at this Italian study:

plosone.org/article/info%3A...

Jackie profile image
Jackie

Hi Make sure you have a T4 and Free T3 test , along with the tSH, some doctors do not do them all because of the labs and cost. It may be that for you , you have to start on a tiny dose, perhaps every other day. I A friend had this problem and was seeing a Prof. this worked for her. I ,on the other hand cannot take any thyroxine , so I have to have armour and a little T3. I have to pay for the armour,on a private script, although I cannot take thyroxine. T3 is not usually introduced to start with and depends if you need it.

Best wishes,

Jackie

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