was diagnosed as having over active throyid & was prescribed meds to regulate unfortunately for some reason the meds caused hepatitis & was hospitalised for several days after which Endo advised only option was for my throyid to be removed ever since Am just not the same person I once was am on 87.5 of Levothyroxine different brands Teva & North Star. And my weight has ballooned my 2 stone despite no change to diet numerous trips to dr to be told join slimming world or weight watchers & weight gain has nothing to do with my throyid condition & am in : normal range: when I asked what normal was for me I was told Not to worry as it was fine I was told I was depressed & would benefit my taking some anti depressants which I refused, am not depressed just fed up with being told am normal no explanation as to why I feel fatigued irritable anxious & gaining weight & all of which has been since my throyid was removed not sure what else or where else to go
Left in limbo: was diagnosed as having over... - Thyroid UK
Left in limbo
Hi Beemac
You are on the correct forum and many of our members have had similar reactions and treatment as you have ,through doctors or endocrinologists not seeming to be aware of how best to treat us.
So many of our members have been told they are depressed, especially when their thyroid gland has been removed altogether and I am assuming the doctor did not check your Free T4 and Free t3.
I have just read your original post and note that you were advised to get some blood tests. Did you get any and do you have the results, with the ranges?
I will state that levothyroxine is T4 alone. T4 is an inactive hormone and has to convert to the Active Hormone T3. We have millions of T3 receptor cells and all of them need T3 in order for us to function normally. The brain and heart need the most.
I found it difficult to recover and I still have my thyroid gland never mind having a thyroid gland removed.
Have you had any of those suggested? Members can respond when they can read your latest results, with the ranges?
I shall add in the previous post, just in case you need a refresher of what was advised:-
healthunlocked.com/thyroidu...
All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between the last dose of levothyroxine and the test and take afterwards.
This helps keep the TSH at its highest as that seems to be all the doctors take notice of and maybe T4. Levothyroxine should be taken, ususally first thing, on an empty stomach with one full glass of water and wait an hour before eating. Food interferes with the uptake of the hormones.
The most important blood tests I believe are: TSH, T4, T3, Free T4, Free T3.
Beemac
Many members have found that Teva brand of Levo gives serious side effects. Best to stick to one brand only even if it means cutting the tablet or alternating dose to give the average daily dose.
As for your test results, always ask at your surgery's reception desk for a print out, don't ask a doctor (you had a typical answer!). It's our legal right in the UK to have our test results, never accept verbal or hand written results, always get a print out. Post results with reference ranges (they vary from lab to lab) when you have them and members can help.
I had so many problems on ALL Teva brand meds-esp thyroid. Now I don't accept my prescriptions until I look at the bottle and check the company who made the drugs. It is always on our label. (US).
Also I am confused and maybe misinformed. I never heard that thyroid medicine causes hepatitis.
Happy to be corrected if I'm wrong. irina
Prior to my thyroidectomy I was prescribed carbimazole as I was overactive & after a week of so of taking them I become really ill & was admitted to hospital as I had developed acute hepatitis the Endo took me off the carbim & my liver count reduced endo prescribed propyithiourail & again developed acute hepatitis according to the endo the medication mentioned above was the only option to treat an over active thyroid & the only option was to have a total thyroidectomy & he couldn’t explain why the medication caused me to develop acute hepatitis. Prior to to delvoping over active throyid I had never had any other ill health or had hepatitis but endo wasn’t able to give any reason or explanation so I had throyid removed.
I understand. It seems you picked up hepatitis elsewhere rather than from the medicine. Not sure I would have let that doctor and his explanations off the hook that easily but that's just me.
I hope you are feeling very much better and are getting the thyroid care you need.
Take care. irina
Dear Beemac - the drug carbimazole can have serious side effects. it can affect your blood count. You can log onto the Yellow card government drug analysis for side effects to report a side effect. You don't have to use any personal details to look at information in graph form of damage to each body area from the this drug, and the level of seriousness of the side effects. As your liver has been damaged, it may take some time for your liver to recover. In a recent post by Sammy3009 in thyroid unlocked, a week ago, titled "Will I Ever Improve?" Sammy explains her journey after a total thyroidectomy. Her dose of levothyroxine was raised by her psychiatrist as she was experiencing bi polar mental health problems due to the removal of the thyroid. Recent information shows that there are a group of enzymes which if are absent, can affect the conversion of T3 to T4. D102 is activated to convert T3 to T4 in other areas of the body other than the thyroid.
To complete the synthesis of the enzymes, selenium and zinc must be present to activate the enzyme found in endometrium, and oesophagus, kidneys, heart and liver and other areas. Another post written by member Rouser seven months ago, titled" Selenium Methione and Total Thyroidectomy" shows his journey. A response by member ResearcherUk explains the importance of selenium to convert T3 to T4. Another contributor stressed ferritin levels were so low after this op, that when they increased to 70 from 10 he felt much better. I guess you need to look at the Government Yellow card website to see if any symptoms match yours, giving rise to hepatitis. If you believe it is the drug responsible, then you may decide to report the effects. This contributes to information on adverse effects of some drugs, and raises awareness. May be your blood levels should be checked for iron deficiency
and vitamin levels as the hepatitis may have lowered the levels.
I do hope you feel better soon.
Just testing TSH and FT4 is inadequate
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you presumably had Graves' disease and Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Come back with new post once you get results and ranges
As SeasideSusie said, many many people have very bad reactions to Teva brand (unless lactose intolerant)
Hello Beemac
Just as a point of reference a fully functioning thyroid would be supporting you with both T3 and T4. and on a daily basis you would be dripfed approximately 100 T4 + 10 T3.
It just seems common sense to me.
You have had a medical intervention resulting in your loosing your thyroid, and so both these vital hormones may need supplementation, at some point in time, and should be on your prescription.
Some people can recover with Levothyroxine alone, some people simple stop converting the T4 into T3 and some people need both these vital hormones supplemented and monitored independently, to regain a level of wellness acceptable to them.
Sadly we seem to end up on this Nhs roundabout of vagueness and noncommittal - and I was left feeling even more stressed, confused and angry with the lack of understanding by presumed professional specialist doctors.
I'm with Graves Disease and post RAI in 2005 - and have been very unwell these past four years. I read you were " overactive " so presume you have Graves Disease.
The good new is at least your thyroid was surgically removed, mine was burnt out by drinking radioactive iodine, and that has caused many additional symptoms for me along the way.
It is essential that you are not monitored on a TSH blood test, and that your T3 and T4 are monitored and adjusted to bring both essential hormones into balance - like weights on a scale - both should be in the upper quadrants of their relevant ranges.
It is also essential that your vitamins and minerals, as detailed on this amazing site are optimal, otherwise your thyroid hormone replacement may not work effectively.
Your thyroid is a major gland, responsible for your whole body metabolism, effecting youphysically, mentally, emotionally, spiritually and psychologically.
It's sometimes referred to as the conductor of your whole body's orchestra.
I'm talking obviously from own experience and I decided to jump off the merry go round and am now self medicating and getting my life back. It has been a couple of years in the learning, read and understand " state " - along with Nhs referrals that got me nowhere and a failed attempt to have a trial of T3 as my TSH was suppressed !!
You might like to take a look at this book written by a doctor who has hypothyroidism :
Dr Barry Durrant Peatfield - Your Thyroid and How to Keep it Healthy - we may not now have thyroids but we do need to work twice as hard making up for what we have lost.
If with Graves the following two books have helped me :-
Elaine Moore - Graves Disease A Practical Guide - she is an American lady with the disease: there is also a very comprehensive website dedicated to all Graves people :
Barbara S Lougheed - Tired Thyroid - from hyper, to hypo, to healing : another American lady with the disease, debunking, among other things the TSH blood test for Graves :
I am now self medicating - I have purchased and trialled both T3 and Natural Desiccated Thyroid and have chosen the latter. I'm doing so much better than when I was on monotherapy with Levothyroxine and am so grateful that I found this site to learn from.
Both of the anti- thyroid drugs used in Graves can cause non-infectious hepatitis (which simply means “liver inflammation”).
“Thiamazole, also known as methimazole, is an antithyroid drug,[2] and part of the thioamide group. Like its counterpart propylthiouracil, possible major side effects of treatment include agranulocytosis and liver inflammation.” Wikipedia
No matter where we live we learn we must advocate for ourselves. So sad when the health care provider (or system) doesn’t include the patient as part of the team. Get the tests and results as already suggested then take the time it takes to learn what you need to know about them.
Patti in AZ
Thank you for that my endo couldn’t give me any reason as to why the meds caused hepatitis & but all I know is that since it’s removal I have never felt right & was due to have private blood test some time ago had 2 sudden deaths in the family so unfortunately got put push asided but have set the ball in motion today to get private blood tests & will post. My dr is convinced that having my throyid out is not the cause of my ongoing fatigue & weight gain for me the symptoms prior to throyid removal seem to have not gone away am just trying to deal with them I did ask on my last visit to be referred back to endo but dr not willing to do so will wait to see if private blood test shows anything
At least 381 researchers say your doc is full of beans regarding hypothyroidism and weight gain.
This one seems especially relevant: ncbi.nlm.nih.gov/pubmed/115...
Weight gain following treatment of hyperthyroidism.
Dale J1, Daykin J, Holder R, Sheppard MC, Franklyn JA.
Author information
Abstract
OBJECTIVE:
Patients frequently express concern that treating hyperthyroidism will lead to excessive weight gain. This study aimed to determine the extent of, and risk factors for, weight gain in an unselected group of hyperthyroid patients.
DESIGN AND SUBJECTS:
We investigated 162 consecutive hyperthyroid patients followed for at least 6 months. Height, weight, clinical features, biochemistry and management were recorded at each clinic visit.
RESULTS:
Documented weight gain was 5.42 +/- 0.46 kg (mean +/- SE) and increase in BMI was 8.49 +/- 0.71%, over a mean 24.2 +/- 1.6 months. Pre-existing obesity, Graves' disease causing hyperthyroidism, weight loss before presentation and length of follow-up each independently predicted weight gain. Patients treated with thionamides or radioiodine gained a similar amount of weight (thionamides, n = 87, 5.16 +/- 0.63 kg vs. radioiodine, n = 62, 4.75 +/- 0.57 kg, P = 0.645), but patients who underwent thyroidectomy (n = 13) gained more weight (10.27 +/- 2.56 kg vs. others, P = 0.007). Development of hypothyroidism (even transiently) was associated with weight gain (never hypothyroid, n = 102, 4.57 +/- 0.52 kg, transiently hypothyroid, n = 29, 5.37 +/- 0.85 kg, on T4, n = 31, 8.06 +/- 1.42 kg, P = 0.014). This difference remained after correcting for length of follow-up. In the whole cohort, weight increased by 3.95 +/- 0.40 kg at 1 year (n = 144) to 9.91 +/- 1.62 kg after 4 years (n = 27) (P = 0.008), representing a mean weight gain of 3.66 +/- 0.44 kg/year.
CONCLUSION:
We have demonstrated marked weight gain after treatment of hyperthyroidism. Pre-existing obesity, a diagnosis of Graves' disease and prior weight loss independently predicted weight gain and weight continued to rise with time. Patients who became hypothyroid, despite T4 replacement, gained most weight.
Thank you Interesting read unfortunately my Drs are dismissive of any connection & are not interested just waiting for kit to come through to do private blood just to check all levels & take it from there
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