Meds dropped

[lynpalmer]

My GP has dropped my levo from 175 to 150. I feel absolutely awful after a month. I am so tired, body aches, and I just feel horrible. I will make an appointment tomorrow as I need a to get my monthly prescription. I am going to try and see another doctor and ask for the results. I have ordered dome zinc, selenium, L thyroxine, black cumin seed oil caps, and vitamin d to see this will make a difference. I find that the GP I see, not being nasty , I don't feel like she does the best for me. My memory has got worse somehow but have realised it could be brain fog but will ask when I see the doctor as well. This is the second time they have dropped the dose as I have had 200 for at least almost 40 years now

[Buddy195 Administrator]

Can you share your most recent blood test results that led to the GP reducing your thyroid medication:

TSH

FT3

FT4

Also add ranges (in brackets) as these can vary between laboratories. If you don’t have them to hand, do ask your GP practice for a print out; you are legally entitled to copies of all blood tests. Sometimes GPs make decisions based on TSH alone and this might be the case for you.

We recommend you test key thyroid vitamins at least annually (before supplementing if needed)

Ferritin

Folate

B12

Vitamin D

These key vitamins need to be optimal to support thyroid health.

[lynpalmer in reply to Buddy195]

Will try for sn appointment tomorrow thank you

[sparkly in reply to lynpalmer]

I would ring or email them this minute and ask for the last 3 copies of thyroid blood plus any other results and get them to email them today. Or check if you have results available online.So before an appointment with a gp you can get expert advice from all the knowledgeable admins and members here on the forum.

They cannot refuse you your results.

[pennyannie]

Hello again :

I've just been reading your previous posts - to read everything you have written on the forum and all your replies - simply press the ' Profile ' icon on this page and that takes you back to the beginning :

Similarly you can read any other person's Profile page by pressing on their icon that ' sits ' alongside their name in any reply.

You may need to run this full thyroid + vitamins and minerals blood test yourself as I found I was being treated by just a TSH reading and getting more unwell :

T4 - Levothyroxine is a pro-hormone that needs to be converted within the body into T3 the active hormone that runs the body- much like petrol runs a car.

We generally feel best when the T4 is up in the top quadrant of its range as this should in theory give us a good level of T3 tracking slightly behind at around 60/70 % through its range.

When metabolism is running too fast as in hyperthyroid or too slow as in hypothyroid the body struggles to absorb and utilise well the core strength vitamins and minerals - no matter how well and clean we eat -

and all thyroid hormone replacement options need optimal levels of ferritin, folate, B12 and vitamin D - for any thyroid hormone replacement to work well - and why we also need these tests run.

Looking back it seems T4 never really worked well for you and see you asked about taking Desiccated Thyroid and met a brick wall some years ago - well that was me too - and now I self medicate Natural Desiccated Thyroid and have my life back.

If you go into Thyroid Uk - thyroiduk.org - the charity who supports this patient to patient forum you can arrange this full thyroid blood test for yourself - there is a page detailing Private Blood companies and suggest you run a full thyroid panel to include the vitamins and minerals :

It is a venous blood draw and best done by around 9.00am in the early part of the week so the sample is processed before the weekend - and you fast overnight, just taking in water, and take your T4 for that day after the blood draw - so leaving around a 24 hour window from last dose of Levothyroxine so we measure what your body is holding rather than that just ingested.

If taking any supplements leave these off for around a week before the blood test if testing said vitamins and minerals so again, we measure what your body is holding, rather than that just ingested.

Once with the results and ranges simply post it all back on this forum, in a new post/question and you will be given considered opinion as to your next best steps back to better health.

Do you know the cause of your hypothyroid - i read your son has Graves - as do I - though I had RAI thyroid ablation back in 2005 - a treatment I deeply regret but knew nothing back then and simply trusted what I was told by the medical profession.

[tattybogle]

Hi, just to say , in my experience it is worth waiting at least 6 wks after a dose reduction, before deciding how it feels.

The last couple of times i've done it , the first 4/5 weeks were really lousy..., but then things slowly improved .. and by about 3-6 mths later realised i actually felt better overall on the lower dose , and i'm glad i'd stuck it out for long enough to find that out.

however another time, things just kept getting worse after 5/6 wks , and on that occasion i did need to put the dose back up .

To see recent blood results , I find it easiest and quickest to go and ask at GP's reception if they will do a printout of the results i want . As long as it's not loads, and you are clear what you want them to look for, they are usually ok about giving you the results there and then . They may say they need to check with a GP first ,, if so, come back another day to collect them.

the thyroid blood results you need to ask for are :

TSH result [and range] ,,,eg. TSH 2.03 [0.37 -4.5]

fT4 result [and range]

and fT3 if done , unlikely , but worth asking .

You want the actual numbers , not just the comment .

Hope that's of some help .

[TSH110 in reply to tattybogle]

I cannot understand the logic of changing someone’s dose when they feel ok on it just to tick some stupid and incomplete number boxes. So much fast typing and box ticking small wonder everything is such a mess - using a brain and actually listening seems to have become so unfashionable in our computerised robotic world

[ClareJenkins]

What measurements did he use to decide to drop your dose?

[lynpalmer in reply to ClareJenkins]

I spoke to the doctor today and he said the TSH was tested one week at 0.14 and the following week it was 0.19 and the free T4 was .24. I do not understand this but will see him on Monday afternoon. It does seem strange that my weight has also increased over the month. It also seems strange that it can increase by 0.05 in a week. I am really worried now and have lost all faith with the doctors now

[tattybogle]

"he said the TSH was tested one week at 0.14 and the following week it was 0.19 and the free T4 was .24 ..... It also seems strange that it can increase by 0.05 in a week."

The difference in those TSH results is actually insignificant , TSH can change by at least that much within the same day due to it's circadian rhythm.

The fT4 result will probably be 24 not .24 and if so ,this is high enough to be over the top of most lab ranges (fT4 ranges are often [12-22] , but there is one that is [7.9-14] ,and some do go up to 26)

So the high / over range fT4 result is one reason why the GP reduced your dose . and the low TSH is the another.

So there were logical grounds for reducing your dose .

[TSH110 in reply to tattybogle]

But what about free t3 the one that really matters? Totally ignored no doubt. It can’t be the right dose it’s supposed to get rid of symptoms, not cause them. 40 years of being ok trashed in one fell swoop.

[LilacandMint]

Doctors and Endos have no idea how changing the dose affects your health. If you were on 200 then 175mg but now 150, it could be that you might need a variable dose of 175/200 to feel well. I take 125x4 times a week interspersed with 100x3 times a week.

The other thing that springs to mind is that you should have magnesium tested. Magnesium is essential in converting T4 to T3.

Your TSH is very suppressed which is why T4 is high. Do you have autoimmune thyroid disease? Have you had a scan of your neck and chest to see if you have a goitre.

[TSH110]

I agree with  pennyannie . I never felt well on Levothyroxine no matter what dose I took. In desperation I tried NDT and have never looked back. Although I feel perfectly well my numbers are not what “they” like at all but my t4 is not sky high so they let it be. They can’t really do much anyway as I am in control of what I take. Even if they are right and I drop dead of it tomorrow at least I actually had a life after my thyroid died but only when I started on NDT and I’d do it all again no regrets whatsoever. I’m not a bunch of numbers I’m a person and I deserve to feel the best that I possibly can after the hell I went through with this darn disorder . If I’d listened to the white coats I’d have died without the treatment I really needed, taking useless inappropriate antidepressants which they worship like a false god. That’s what I was offered when I finally demanded a thyroid function test but I stuck to my guns and the results were dire. A few weeks later I’d have been a goner dosed up on Prozac if I hadn’t determined not to leave the consulting room until I got that test. Levothyroxine did save my life but did not restore me to full health. Sometimes you have to take the law into your own hands or suffer untold miseries if left to others who think they know your body better than you do. That rings immediate alarm bells in my book.

[lilliebetfairies]

hi o truely feel your pain I was on 225 a day dr dropped to 175 told it was due to research saying that many people are over prescribed thyroxine and it damages the body like you my old symptoms are com My back. I was told due to my age 54 my levels have changed since I was originally diagnosed I am still having periods so do not see the reliance. I would concur that a different doctor may be your route forward I did this and they have ordered another screening problem is I was told by the original Doctorow that cared for me told me that due to the level I was taking as my thyroid was non functioning my levels do not show in bloods the nhs take so not sure of it will help me. Hope you are sorted soon keep us updated