Hi I am new here. My endo took me off Levo 175mcg temporarily to understand why my levels keep fluctuating, my last results before being taken off were
Dec 2017
*TSH 4.69 mIU/L (0.27 - 4.20)
FT4 14.8 pmol/L (12 - 22)
FT3 3.6 pmol/L (3.10 - 6.80)
*Thyroid peroxidase antibody 887.5 IU/mL (<34)
*Thyroglobulin antibody 950.3 IU/mL (<115)
Symptoms are mostly tiredness, dry eyes, constipation, vague aches in hips/back/wrist/elbow/knees, joint stiffness, dry skin, dry lips, feeling cold, puffy eyes, weight gain, breathlessness.
Thanks in advance for any help.
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VX556
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You were already seriously under-medicated in December. Now you've had your meds taken off you, you could end up very severely hypothyroid and in a coma by March.
More and more members are joining the group and reporting that their endos are taking their meds off them, and treating them like lab rats for their idle curiosity (and no doubt to save money as well). Unfortunately, doctors appear to be trained to believe that hypothyroidism is a mild disease that is not important - and I firmly believe this is done because it mostly affects women.
A couple of people have reported that they ended up in a coma or close to a coma and needed to be hospitalised to save their lives.
Myxedema coma is defined as severe hypothyroidism leading to decreased mental status, hypothermia, and other symptoms related to slowing of function in multiple organs. It is a medical emergency with a high mortality rate. Fortunately, it is now a rare presentation of hypothyroidism, likely due to earlier diagnosis as a result of the widespread availability of thyroid-stimulating hormone (TSH) assays.
Early recognition and therapy of myxedema coma are essential. Treatment should be initiated on the basis of clinical suspicion without waiting for laboratory results. Important clues to the possible presence of myxedema coma in a poorly responsive patient are the presence of a thyroidectomy scar or a history of radioiodine therapy or hypothyroidism. A history obtained from family members often reveals antecedent symptoms of thyroid dysfunction followed by progressive lethargy, stupor, and coma.
By the way, people in myxedema coma aren't necessarily in a coma of the type featured on TV. They may still be able to move (sluggishly) and talk (slurred, and possibly not making much sense).
For more info google myxedema coma or myxedema crisis. Myxedema is the old-fashioned name for hypothyroidism, but it is still used in some circumstances, including coma.
So, I think you should go to your surgery, ask to speak to the duty doctor, and ask for a prescription for Levothyroxine. Take a sympathetic man with you as a witness, and insist you need Levo. You could read this, print it out, and show it to the doctor.
If you get no joy from your surgery, go to A&E.
diogenes helvella Clutter
Can any of you suggest how much Levo this member should be re-started on? And is my suggested course of action the right one?
I would restart on 125 see how it goes for a fortnight or so and add 25 increments slowly up to the 175 again. Tests should be done for each incremental rise. Ignore the TSH if it goes very low below the normal range. The longer you are without T4 the more difficult the restart and your response to it.
The reason for your fluctuating results is clear from your post. It is your high levels of antibodies causing the problem. Your positive antibodies show that you have autoimmune thyroid disease or Hashimoto's Thyroiditis.
I wrote the following explanation for someone else a little while ago which describes what the antibodies do. Some of the questions I ask have already been answered by your post.
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Have you ever been told by a doctor that you have autoimmune hypothyroidism or Hashimoto's Thyroiditis (known to patients as Hashi's)? Hashi's and autoimmune hypothyroidism are two names for the same thing. In the UK doctors rarely use the name Hashi's.
I would guess that you have Hashi's. 90% of cases of hypothyroidism in the UK are caused by Hashi's, so it definitely isn't rare.
What having Hashi's means is that you have antibodies in your body which are attacking and destroying the cells of your thyroid. The destruction takes a while - could be years or decades. The antibodies I refer to can be measured with blood tests. If you've never had thyroid antibodies tested then ask your doctor for the test.
The problem with having antibodies is that their numbers and activity level fluctuate, sometimes very strongly. Fluctuations where the antibodies actively destroy your thyroid may last only hours or days, then things go quiet until next time.
When antibodies kill cells in your thyroid, the hormones contained within those dead cells is released into the body and bloodstream. This extra hormone can be detected in blood tests. The results are that your Free T4 and Free T3 will go up, and as a result your TSH will then go down.
When antibody activity diminishes again the Free T4 and Free T3 will drop and your TSH will then rise.
Over time more and more of the thyroid is destroyed and eventually the patient is permanently hypothyroid. In fact this is usually what doctors wait for before treating the patient for hypothyroidism. They don't try to arrest the destruction of the thyroid - they don't know how and there is no pill for it.
A lot of doctors have no clue how autoimmune hypothyroidism works. They certainly don't understand the fluctuating thyroid function test results, and it is quite common for patients to be blamed for "misuse of their thyroid medication", assuming they have been diagnosed with hypothyroidism and are being treated. There is no way that antibodies can be treated pharmaceutically, so doctors generally just ignore them.
A problem for patients is that antibody numbers fluctuate and so if blood tests are done when the activity level is low blood tests may come back negative. A positive antibody test is conclusive. A negative test is not. Some people have scan evidence of their thyroid being destroyed, and a conclusive diagnosis of Hashi's via that route, and yet they may never have a blood test at just the right time to catch the antibodies.
So, coming back to what happened to you, you obviously had a flare up of antibody activity, your Free T4 and Free T3 may have gone high, and your TSH would then have dropped. The doctor decided you'd "gone hyperactive" and stopped your meds. But the antibody activity may only have been high for a few hours or a couple of days. So coming off your meds for a couple of days to reduce your high hormone levels may have been all you needed before resuming your Levo. Certainly, giving up meds for several weeks has been a disaster for you.
Do i go on 50mg or bk on my 25mg?
Advice please as im stressing now cos ive had no levothyroxine in me for 7 weeks???
What if 50mg sends me overactive again.
It isn't the Levo that "sends you overactive". It's your thyroid antibodies. I would suggest you re-start at 50mcg per day. Then make sure you aren't kept on that starter dose for more than 5 - 6 weeks before having another test and increasing your dose by 25mcg. Then stick to 75mcg per day until a re-test after another 5 - 6 weeks, and keep on going that way until your symptoms are resolved.
Were you aware of being "sent overactive" at the time you had your meds taken off you? If you can persuade your doctor of what is going on then perhaps he might trust you to cut down or stop your meds for a few days then re-start them depending on how you feel. One thing you might want to try is taking your temperature first thing in the morning before getting out of bed, and keeping graphs of the results. However, if you are pre-menopausal the menstrual cycle alters temperature too, so you would have to become expert in what your own menstrual cycle was doing as well as learning the significance of any sudden drops in temperature or sudden increases. (Low temperature suggests low activity of antibodies, higher than usual temperature suggests the antibodies are busily killing off your thyroid and raising your hormone levels.)
There is some good news... For some people, antibody numbers can be controlled and reduced by diet. The most common thing to help is going gluten-free. It has to be done ruthlessly and religiously. People can't be "almost gluten-free". That's a bit like saying someone is a little bit pregnant - it's nonsense. I suggest trying gluten-free eating for a couple of months, and see how it makes you feel. But before you start, get blood tests done of the TPO antibodies and the Tg antibodies. After a while you could test again and see if the numbers have changed, although fluctuations in the activity and numbers may make the tests a bit hit-and-miss.
Another thing that helps some people reduce antibody numbers is taking a selenium supplement - 200mcg per day.
There are other dietary changes that some people try - removing casein and lactose from the diet by giving up animal milk products. Others are removing nightshades from the diet, or eating a low histamine diet. The basic aim is to maximise gut health because this seems to help reduce antibody numbers. But only try one thing at a time, and if a particular intervention doesn't help, go back to eating the thing you removed from your diet again. (The only thing I've tried myself is going gluten-free. It has been a huge success for me for various reasons.)
Someone you should do a search for is Izabella Wentz. She is a Hashi's sufferer herself, and she has a website, a Facebook page, has appeared in a few Youtube videos, and has written a couple of books which are available on Amazon.
I know. You were under-medicated. I wrote the post above for someone who was hypothyroid but was having a Hashi's flare. I copied it for you because I was explaining how thyroid antibodies make thyroid test results fluctuate.
Okay, your TSH was in range. But it was too high in range for most hypothyroid people to feel well. Most of us need a TSH from the bottom of the range up to about 1. Some even need a TSH below range.
Your Free T4 was in range, but below mid-range. It would have been improved with a higher dose of Levo.
Your Free T3 was also too low. It was also below mid-range. It is low T3 that gives people symptoms of hypothyroidism. Everyone needs to find their own personal sweet spot, but your perfect Free T3 could be anywhere from, say mid-range up to the top of the range (although most people on Levo need it to be less than top of the range).
So, in summary, the results you had with TSH = 3.8 showed you were in under-medicated. The next results with TSH = 4.69 showed you were even more under-medicated. And now your endo has taken you off your meds altogether for sadistic and stupid reasons, potentially at enormous risk to your health and your life.
You should ask your doctor for Levo, and refuse to see that same endo again (and make a complaint about him).
Ask him exactly how big you should be , what is the range ? 15 .3 stone to 17.5 or else you are healthy.Is it tax payers money funding this circus of clowns?
When you feel well enough, you should write a letter of complaint about your treatment to the Chief Executive of the hospital (it usually has better results than involving the standard NHS complaints procedure). This endo doesn't deserve to be called a doctor.
You have not completed your Bio on your Profile. We have had many cases recently where people have asked so many questions and yet we have not been able to be supportive. In fact some have mentioned that some of these people could be trolls. We appreciate you are not one of these - so please give members more information ....
Marz I'm curious to know why you are suspicious of anyone without info on their profile ? I don't have anything on mine as I don't wish to share my history, it doesn't mean I'm a likely troll. I think the op is justified in being upset with the response. Just saying 🙂
I was recently alerted by Admin that there have been trolls operating or possibly just one - so we spend ages replying with lots of details with a NIL response - so am just being cautious and more aware than I was before. I have always been an enthusiastic responder for the last 6 years - only now beginning to understand I could be wrong .....
OK happy to help. Can you post your results for B12 - Folate - Ferritin - VitD - these all need to be optimal and not bumping along the bottom for you to feel well and for your Thyroid Hormones to work well in the body ....
So how are you treating your iron deficiency ? Your results for B12 seem to be after you started injections. VitD would be better at around 5000 IU's - so maybe two sprays a day. Thyroid hormones do not work in the body until all the above are OPTIMAL
My GP stopped my iron after I complained about digestive symptoms on the ferrous fumarate. I have only had 2 injections but B12 was 445 before injections. Thanks
I think I might stay living in Cambodia , if that was done to me , knowing what I know . I would call that an assault and the endo may end up in a different part of the hospital - where they keep the fridges.
For gods sake move on and look after your own interests.
Levels do fluctuate and can be confusing but trust me , keep raising slowly until you hit your sweet spot and don't ever stop meds completely.
You can survive (very unwell ) with very little hormone , but with none your dead.
That was very dangerous and sadistic of your endo when you were obviously already undermedicated as shown by your bloods> I think you need to ditch this endo who is obviously out of his depth. The usual reason for "results" (which results?) fluctuating is autoimmune thyroiditis, which you have, as show by your over range antibodies. The usual/correct response is to dose by free T3/free t4, not TSH, but to get the TSH down to as near the bottom of the range as possible, which, together with a gluten free diet may help to prevent further antibody attacks. The last thing you want to do is stop taking replacement hormones!
if you still have levo, keep taking it until you sort the situation. If you don't have it, and they insist on taking you off it, consider sourcing some replacement yourself.
I would just tell them , I don't agree to stop meds , either you give me or I get myself and I want that on record so you are responsible for any consequences .I am hypo and it is the law that hypo patients receive replacement hormone , regardless of doctors curiosity to see the effect of not having it.
Although really , myself , I do not suffer fools gladly , my last words to my GP regarding my thyroid were ' doctor , throughout my life I have always known when to walk away ,bye. And that was relatively early , didn't take long for me to see tat they were not going to be of help due to the ' system ' .
I sourced thyroid -s , done my own labs and have gone my own way - in the direction of recovery rather than tied to misery.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Obviously your are terrible in part because under medicated
More supplements required
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Also request list of recommended thyroid specialists. Your current one is likely a Diabetes specialist
Professor Toft recent article saying, T3 may be necessary for many
Make urgent appointment with your GP (or any GP at the practice) today
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
If you can then please take someone into the appointment with you. Preferably a man or someone who is assertive and can speak up if necessary. It's amazing the difference it makes when there is a witness. If no-one available, record the consultation on your phone, either openly which will make the doctor very careful about what he says, or covertly if you wish and you will have any evidence you need if you are shouted at or inappropriately treated.
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