Am i taking right medication : I have suffered... - Thyroid UK

Thyroid UK
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Am i taking right medication

Notepad21
Notepad21

I have suffered from underactive throid for well over 25 yrs and despite always fighting a weight issue i have been relatively well . That was until May of this year when doctor said he wanted to take me off Liothyroine which I had been take for at least 15yrs . I was taking 100mcg of levothyroxine Activis brand and 20mcg of Liothyroine sodium Tevna brand . He increased my dose of Levo to 200mcg and asked me to stop taking the Liothyroine. Since then I have suffered every symptom going. I asked for a referral to endocrinologist and due to attend this on Wednesday. My last blood count was TSH 7.8 and T4 11.2 I don't get any other results but having read several stories on her I think I need to ask for complete test results. I didn't realise the impact thyroid can have on the whole body until recently. Can any one explain what my results should look like

Thanks everyone

9 Replies
oldestnewest

Irrespective of you needing it or not, your Dr was wrong to take you off T3 suddenly, and only on his own cognisance:

Patients currently prescribed liothyronine, or levothyroxine and liothyronine combination therapy, for hypothyroidism should be reviewed to consider switching to levothyroxine monotherapy where clinically appropriate. In some cases a retrospective review of the basis for the original diagnosis of hypothyroidism may be necessary. Arrangements should be made for switching to be undertaken by a consultant NHS endocrinologist, or by a GP with consultant NHS endocrinologist support.

You can point out to the Endo that:

In rare situations where patients experience continuing symptoms whilst on levothyroxine (that have a material impact upon normal day to day function), and other potential causes have been investigated and eliminated, a 3 month trial with additional liothyronine may be appropriate. This is only to be initiated by a consultant NHS endocrinologist. Following this trial the consultant NHS endocrinologist will advise on the need for ongoing liothyronine.

Here's the important RMOC source document for you to read further: Guidance - Prescribing of Liothyronine

sps.nhs.uk/wp-content/uploa...

Even without the reference ranges, it is clear that you are under-medicated, but really, as you say, you need to know your FT3 level, which presumably has fallen without your Liothyronine. (When mine was withdrawn, my FT3 fell from top of the reference interval to only 0.1 above the bottom before I started it again). I'd suggest you do what so many of us do, which is to have a more comprehensive set of tests carried out privately, to present to your Endo. If you do, you need TSH, FT3, FT4, Folate, Ferritin, Vit B12 and Vit D, plus TPO and TG Abs to get a rounded picture of what might be going on in addition to your T3 problem:

thyroiduk.org/tuk/testing/p...

Thanks for the reply . I can't believe I have been so ignorant of a condition that has affected my life for so many years but I'm guessing forums like this and the powers of the internet weren't around when I was first diagnosed . I spent all night reading useful links that yourself and others sent. I have appointment with endocrinologist tomorrow which I'm dreading in case they take me off Liothyroine. I'll keep you posted if that's ok

SlowDragon
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Also extremely common for vitamin levels to drop dramatically if T3 is withdrawn

Highly likely to need vitamin supplements asdirect result

Your GP should NEVER have withdrawn T3. This is directly against guidelines. It can cause extreme instability and illness

GP should never alter T3 prescription - should refer to endocrinologist

pulsetoday.co.uk/news/clini...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when back on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Hi Slowdragon. Thanks for your very detailed response. My doctor did agree to reinstate Liothyroine to my prescription but clearly from his actions he doesn't understand the effects these little white tablets have. He has now doubled my dose of Liothyroine from 20mcg to 40 mcg. He stopped it completely 6 months ago. When I had been feeling fine. Im at the hospital with endocrinologist in the morning so I've just taken 100mcg of levothyroxine and 20mcg of Liothyroine. The dose I was on 6 months ago before GP started yo yoing my medication. Thanks for your support .

SlowDragon
SlowDragonAdministrator
in reply to Notepad21

Liothyronine should only be adjusted by extremely small doses

Doubling the dose from 20mcg to 40mcg was equally ridiculous and likely now over treated

How do you take your T3? Many people need to split the dose into 2 or 3 small doses per day

T3 should only ever be increased by 5mcg and retesting FULL Thyroid 6-8 weeks later

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Absolutely ESSENTIAL to test vitamin D, folate, ferritin and B12

Lack of thyroid hormones can badly affect gut biome and gut function....leading to very low vitamins

Low vitamins prevent thyroid hormones working

Your GP is ignorant and should not be meddling with doses, he clearly doesn't understand Thyroid Treatment and should not be allowed to ever change dose in future

Hi Slow Dragon . I currently take both levothyroxine and Liothyroine when I wake with a large glass of water . Then wait an hour before having breakfast or a bit drink. I was advised to stop drinking alcohol and caffeine so stopped my wine and coffee about 3 weeks ago. I am seeing endocrinologist at 2pm tomorrow so will wait till after that to take medication. Can you suggest a better way to take my tablets . Any advice would be appreciated

shaws
shawsAdministrator

Your TSH is too high. The aim is 1 or lower. The fact that your T3 was removed after 15 years is awful. I have no doubt your body is not coping so well without it. Doctor should not have withdrawn immediatley but I believe they were given that advice and most justed halted without giving the patient time to cope and to try and find a source. I think it's really awful that those who were well on levo then had to try to source their own. It is a ridiculous situation. I think I'd send a letter to The Lords as TUK and other support groups met but nothing has really happened yet.

It is due to the cost going up by abut 6,000% and I can relate with you to not having T3 prescribed. We were so hopeful when we found two more companies were going to provide T3 and we never thought that all three charge around the same for each packet.

thyroiduk.org.uk/tuk/campai...

I think you have a very good case, having been taking T3 for over 25 years. I think I'd demand that your GP restore your prescription and that you're going to contact The Lords to complain.

Notepad21
Notepad21
in reply to shaws

Thanks for the reply Shaws. I spent all last night reading about a condition I have had for 25yrs plus. I guess I have been ignorant of the symptoms and took the word of my doctor that I needed a little white pill for the rest of my life . I clearly didn't realise the impact this condition was having, putting the causes down to lifestyle and my weight. I'm certainly on a mission now to discover just what my body needs and won't rest till I get what I need. Doctor did prescribe Liothyroine again but this time doubling my dose which has done nothing but give me palpitations. Clearly he hasn't a clue. I trying to get the dose right myself by closely monitoring and recording what I take and how I feel. Thanks to people like yourself who understand the condition far better than GP's I think I'll get there as don't want to spend the next 25 yrs struggling with this condition.

shaws
shawsAdministrator
in reply to Notepad21

The following link will be helpful but to double your dose of T3 must have been an awful experience. All increases have to be gradual, This will be helpful:-

naturalthyroidsolutions.com...

Doctors blame the patients for 'eating too much' when we complain of unexplained weight gain. They certainly do not know that levo, if not at an optimum (i.e. all symptoms are relieved) we will gain weight because our metabolism is too low maybe because we probably don't convert levo sufficiently into T3.

When I am on public transport - and I think other members will also - can pick out others who are hypo. One TV person has put on an enormous amount of weight and I think it's due to hypo but doctor will blame her for eating too much. Probably symptoms are relieved but not being on an optimum can causes weight gain in some people.

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