Hi all , 45yo Male diagnosed with Hashimoto's. After numerous years on levothyroxine and after speaking to my endocrinologist who said there's nothing more he can do to help me , my most recent blood test he said was fine, I've stopped taking my medication with for a period of 6 months on his advice , to see if the side effects ease that are making me really ill.
Ever since I started on medication about 6 years ago I've not enjoyed it at all and within the first week I wanted to stop.
I've tried different brands , different doses , different times of day all to no avail.
One of the worst ones was heat sensitivity ( I really cannot cope with this) in winter I found it hard to get warm , and now in the warmer weather once my body gets to a certain temperature I can't cool down and sweat profusely under my arms .
Add that to fatigue, no strength, no libido ,chest pain , brain fog stomach and dental pain ,nausea, depression, anxiety and no zest for life, Balance issues..... and others......
Now 2 weeks with no levothyroxine , still got the side affects but I believe could take 4 - 6 weeks to leave my system , I'm having hunger pangs that I've not had in years , dental pain has eased but feel like my jaw is permanently clenched and have tingling sensitivity on the left side of my head.
I'm interested if any one else has come off and what your experience was .
Thanks for taking time to read .
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HashiJ
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What were your results TSH FT4 & FT3. Include the lab range. Were they all tested?
Levo doesn’t work well without optimal nutrient. Folate, ferritin, B12 & Vitamin D. Were these tested?
Many report feeling better when initially ceasing Levo, and I’ve never seen an explanation of why. Often the symptoms gradually return & it can take a while to get back on track again.
I see you tried different brands & timing. Do you think you could have an absorption issue?
TSH should be under 2, FT4 top third of range & FT3 at least half way.
Your TSH too high & FT4 very low, you really needed an increase.
FT3 & Folate should be tested. There are private options. Will add link below.
75mcg is 1 step up from standard 50mcg starter dose. Most need much higher. An appropriate guide is 1.6mcg Levo per 1kg body weight.
Some are sensitive to dose changes and increases can be by 12.5 (half 25)mcg increase at a time. Always allowing 6 weeks on consistent dose.
What time was test & had you taken replacement prior?
Testing recommendation for thyroid test:
A - Always check what’s being tested & collect test results with reference range.
B - Biotin - cease 3 days before draw to avoid possible test interference
C - Consistent unchanged dose - minimum 6 weeks previously before retest
D - Delay replacement dose on day of test (take after blood draw)
E - Early morning appointment. (Book as close to 09.00 as possible)
F - Fast overnight. This can have a slight impact. Drink lots of water
Might make faster progress to arrange a private test. As Doctors often won’t / can’t test everything such as FT3 and key nutrients - folate, ferritin, vitamin D & B12.
You order test online the kits arrives via post, sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.
List of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies. (Medicheck advanced) Others basic function only. (Monitor my health) some also have discount codes available.
HashiJ 'I've stopped taking my medication with for a period of 6 months on his advice , to see if the side effects ease that are making me really ill.'
Did your endo really say six months? Or was it six weeks?
Either way, it's too long to be without thyroid hormone if your thyroid isn't producing enough. Lalatoot frequently talks about her 'coming off thyroid meds' experiment, and it's not a happy story by any stretch of the imagination.
Yes, I came off levo, it really didn't suit me, and yes, I felt a thousand times better. But, I had a back-up plan: first NDT, which was worse, and then T3 mono-therapy, which I am still on. What is your endo's back-up plan for you? Because you cannot live without thyroid hormone.
There could be other reasons why you're not doing well on levo:
- dose too low
- low nutrients
- conversion problem
But without more information we cannot know if any of these apply to you.
I was so looking forward to the appointment, I thought going into it I was going to get the help I was looking for but came away with no answers whatsoever......He kept saying that there was no alternative
Just goes to show how much he knows! Or, perhaps he meant no alternative on the NHS, which is notoriously ignorant about thyroid. You'll have to tell him what you want, insist on it. If you feel better after six weeks without levo, but your labs tell a different story, tell him you want to try T3.
No, it's rarely easy to ask for T3. And with your results, I wouldn't even broche the subject if I were you. First, you need to know how well you convert and you can't know that until your TSH has come down to at least 1, and your FT4 risen to over mid-range. Then, you compare your FT4 with the FT3 and you can easily see how well you convert. We can do that for you.
Your immediate problem is not that you need T3, it's that you've been grossly under-medicated. So, before getting onto the thorny subject of T3, you need at least one increase in your dose of levo - probably two or three - to bring your FT4 up to a level where you have something to convert. So, that should be step one - after you've gone back on the levo, of course.
The problem with T3 is that doctors do not know what it is or what it does. I know that sounds incredible, but it's true. And several doctors have confessed that to me. Therefore, they are either terrified of it, or claim that there is 'no proof it works' - which is utterly rediculous - or they say they 'don't believe in it'. Which is somewhat like saying you don't believe in stomach acid and the food just magically melts when it gets into your stomach! So, for all those reasons, a lot of them don't want to prescribe it. Therefore a lot of us buy our own on-line, and self-treat. Which, for me, costs about €160 for three months - maybe less - but I take a lot of T3.
But, you're not there yet, and I always recommend taking this journey one step at a time. And, as I said, your first step is to get back on your levo (ignoring your endos beyond stupid suggestion of stopping it) and then get a 25 mcg increase in dose. Stay on that for six weeks and retest. And, then, we can take it from there.
DippyDame it’s much worse than a cop out, although I do know what you really mean. I wonder if these ‘twats’ know what they are saying or in any shape or form understand how it’s received by the patient. As for CARE it’s clearly non-existent. It’s delivered (mine was to me) like a death sentence. That’s it. No more treatment. Nothing to offer. AND they are getting away with it inside the confines of the consulting room. What the heck can be done about this? Obviously self medication but this state of affairs is ……. No bloody alternative??? Unacceptable.
Totally unacceptable...we are up against a group of people with enormous clout who are afraid that any attempt to listen to our side of the issue (far less agree with it) would undermine their lofty positions and reveal that they had been wrong for the last 50 or so years.
The majority of thyroid patients, it seems, do well on basic LT4 treatment so medics cannot or will not try to understand why a relatively small cohort fail to respond....to them we are a nuisance, an irritant, a group of neurotic ( mostly) women who have the potential to upset their well established routines. Can't have that chaps!!
How could we possibly understand, we don't have medical degrees! Well folks, with enough grey matter, we can learn just as they did, by reading... and, significantly, by lived experience.
Many years ago I told an arrogant, patronising and ill informed GP that if she didn't have the answers then I would find them myself. She smiiled and said, " Oh don't worry about doing that you'll only upset yourself....just do as we tell you".
Thankfully my current GPs are more understanding of my decision to self medicate....but they work with one hand tied behind their back.
It'a a monumental mess that we are reduced to trawling the planet to find reliable sources of T3 or NDT to allow us to function
Large petitions to Holyrood and Westminster have so far failed to breach the barriers protecting established ways.....
Not to put too fine a point on it HashiJ, don’t we all? Hopefully with the help of the forum this will be sorted out. However because your endo has made such a ‘hash’ you must take your time and work through all this nonsense they have created for you!
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
How other member saw how effective improving low B vitamins has been
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...
Well, there you have it! You are terribly under-medicated. 75 mcg is just one step up from a starter dose, and is much too low for most hypos. And, your TSH reflects that. It should be 1 or under. With a TSH of 4.16, you are still hypo. Your FT4 is only 49.47% through the range, it should be more like 75%.
Also, your B12 and vit D are much too low.
B12 should be at least 550, and vit D at least 100. Those two factors alone will make you feel pretty terrible, without the low thyroid hormones. So, very much doubt if it's the levo itself causing the problems.
It's the excessive sweating that is confusing , that's what the major issue I tried to get over to him ..... its like he read my last results and said I'm fine
Don't try and rigidly divide hypo/under-medicated and hyper/over-medicated symptoms because many of them can be from both. But doctors know next to nothing about symptoms because they don't learn about them in med school, and don't seem to benefit from experience of talking to patients - probably because they don't listen to patients! Also, the excessive sweating could have something to do with the low vit D. Nutritional deficiency symptoms can be very like thyroid symptoms.
A perfect example of cognitive dissonance. They literally refuse to see the contradictions in the advice, and the fact that the advice doesn’t seem to give the results expected.
We are the tip of the iceberg, those of us, who actually realise we’re being terribly managed,
I have a public facing job and I have got chatting to numerous people with hypothyroidism, with comorbidities, not thriving and under-medicated. Frequently even if they know they are being mismanaged, they will not say anything for fear of being “punished”.
The excessive sweating is likely a combo of being underdosed and your adrenals struggling to cope. It is very common. Usually it's a case of either not being able to sweat or sweating buckets. I endured both for years. I ended up avoiding going out on hot days as much as possible. But one day during a summers afternoon, I went to meet a friend in Holborn, London for lunch. I travelled on the underground and I sweated buckets through the journey. I was light headed by the time I arrived at the Station.
I had got my clothes so totally soaked through with sweat, that on emerging from the station I had to go to the nearest shop - Dorothy Perkins - around the corner of the station, remove my clothes and buy an entirely new dress. It was so bad I had to change into the dress, remove the ticket and pay for it whilst still wearing it.
The dress was too small, and I was never even going to wear it again, but I had no choice.
It's important to take salt, preferably good quality unrefined sea salt/Himalayan to maintain sodium levels and support adrenals. I discovered my sodium levels were extremely low.
You could try an adrenal tonic on days the sweating is bad, in something like coconut water to replace potassium levels, or add Cream of Tartar. Google adrenal tonic. You can take it twice a day.
The sweating is terrible, it only seems to happen when my body gets to a certain temperature then my head starts burning up ( but stays dry), my underarms , my Boxers and socks are soaking.
The only reason I'm currently going into work is because I wear overalls.
Prior to being diagnosed, I would wake in the night, every hour, dripping with sweat. But, during the day, when everyone else was sweltering in the summer heat that year, I hardly noticed how hot it was. Sweating doesn't mean you're hypER, or even 'normal' thyroid wise, it means that the body has lost it's ability to control its temperature.
This is the problem my body just can't handle it , it's so embarrassing and depressing.
I've only ever linked it to levothyroxine because I sort of started sweating around the same time I started medication.... and it's gradually got worse
I think if it just began before or after you started your meds, or changed at a certain level of levo, (although it looks like you really need to get that sorted as per previous replies) it’s a sign of you body changing and adjusting to the new things happening to it. It could well calm down very soon by adjusting meds as suggested. Most people, I think, have some things go haywire for a while after starting meds for thyroid issues. Doctors never seem to know this.
Time for a reassessment of the treatment of hypothyroidism
John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann
If thyroid levels are normal ( which yours absolutely are not) patients with mild Hashi's may not initially need T4 hormone replacement...this may have confused this endo .
If weight gain is caused by hypothyroidism (and resultant low metabolism) then diet alone will not solve the problem. Reducing calories may have a temporary impact but for lasting results you need more thyroid hormone to increase metabolism which burns the calories!
We also need to consider your T4 to T3 conversion is good.. High FT4 with low FT3 before levo is added.
For good health every cell in the body needs to be flooded with T3 which becomes active once attached to T3 receptors in the cell's nuclei. The body needs a constant and adequate supply of T3.
I'm not surprised you feel unwell....your endo is clueless and is fobbing you off....not fit to practice!
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
The guys above have given you a very necessary and knowledgeable information dump. They did this for me and literally saved my life. I’m following you so I can see how you go - unbelievable endo suggests you come off meds for six months 😳 (actually, no it’s not. It’s depressingly believable ). 😢
Your endo is worse than clueless - likely a diabetes specialist (you can find this out they will have a profile batting around on the internet or on hospital website). Don’t forget no Drs names mentioned except private message. 😉
Being hypo raises cholesterol *in guidelines
Adequate replacement will often bring cholesterol down *in guidelines
TSH is unreliable and on first scientific principles, why use an INDIRECT measure when the thyroid hormones and symptoms can be used - science and medicine seem to have parted ways. My own assessment.
Statins are not recommended for people with hypothyroidism * In guidelines
Have a look at their own NICE and NHS guidelines and you will know more than they do.
Sounds like you have been consistently mismanaged by someone who doesn’t know enough to be competent.
Your TSH clearly indicates you are not on enough thyroxine treatment. Even though your results are within the NHS ranges,which are set too wide, you are definitely not in range. Any TSH above 2 and you’ll get symptoms. To be virtually symptom free you need more medication to get your TSH to around 1-2. A healthy persons TSH is normally around 1-2. This was explained to me by my private only endocrinologist. I had many years struggling on levothyroxine not knowing really anything myself back then I just went along with my GP’s advise. I now know much more about the thyroid and my condition after learning so much on here and through my private only endocrinologist. The most important thing is to find your sweet spot as it can vary. My sweet spot is a TSH of about 1.00 and T4 and T3 levels mid range without digesting my medications prior to the blood draw. I found out I’m a very poor converter of levothyroxine T4 to the most important hormone T3. Going private only was my saviour. The NHS is basically clueless regarding thyroid issues. I cannot believe your NHS endocrinologist has suggested you stop levothyroxine. Next thing your TSH will sky rocket and you’ll feel worse. I stopped my levothyroxine thinking it was that drug making me worse. It wasn’t. I felt awful stopping. What is was is my body couldn’t convert it properly. As soon as we introduced T3 liothyronine medication combined with levothyroxine T4 medication I felt brilliant. I also felt full of energy and life. T3 was a game changer. But this only happened due to going private only. If you’d like details of my endocrinologist please just private message me. You may not need T3 medication though what you need to do is bring your T4 level up to the top of its range then check to see if your converting to T3 well enough and importantly how you are feeling at that point
One thing at a time otherwise it’s difficult to work out
Even a TSH of 2 is too high for me. I would be a mess if I had your numbers. I am still trying to find my sweet spot. My numbers are improving, but even with a TSH of under 2, I still required an increase.
Thanks for all your replies and advice , there is certainly alot to take in .
When I had my appointment with the endocrinologist, my words to him were "I cannot carry on the way I have the last couple of years "
His response was that "there is no alternative and I only had subclinical hypothyroidism anyway, so take a break for 6 months but if you do your cholesterol will rise"
So little update, hada gp appointment who was very aggrieved in the way I've been treated by endo so has requested I need a face to face.
I've just had the worst 3 weeks of my life coming of levothyroxine but also had the best week in 6 years.
I've so many questions but no answers.
Ever since I started on the medication I felt ill
I persevered , all the while stating how I was feeling...... it was all ...up dose , down dose, alternative dose , change brand .... so on on........its been 6 years.!!
What if I cannot tolerate levothyroxine why has no one picked up on it .... its been 6 years with advise of so called specialists .
I'm now so angry with people that are supposed to have my welfare at heart.
Who do I now trust....... im currently weighing up logic .......
Do I want to be ill and take medication that proffesionals are telling me to take and be even more ill
Or do I be ill and try to manage myself.
Sorry to rant..... I've had a little sunshine drink ( and I've not sweated profusely ) but I'm so angry that I followed advise that has made me question our nhs
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