Can someone give me some advice? My thiyroid was removed in May this year.. I was put on 125mg of levo, then dropped to 100mg,then dropped again to 75mg..ive just ad my bloods done again on Monday 23rd sep.. I requested my vitamins ect to be tested also b12.. Ect as you lovely people say on here.. I then receive a msg yesterday saying I needed to make an app regarding my blood tests.. Then I received a phone call today saying I do not need to see my gp and just go down to 50mg of levo their was no mention of my vit results also since May no one has checked my blood pressure or anything is thus normal for us with no thiyroid.. I must say I have been feeling so unwell this last 3 weeks I feel like I'm drugged my head is swimming and I feel so lethargic and fatiqued I also feel nauseated and don't want to eat... I've asked again for my blood results and the receptionist as promised I can get the on frid..
Thanks in advance for any replys
Karen.. 👍
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You really need those test results, so pick up a print out (don't accept verbal or handwritten copies), make sure the results and the reference ranges are on the print out, then post the results with ranges on the forum. I would get all results going back to when you were first put on Levo. We can then see what's happening and why they've been reducing your dose.
If vitamins have been done, when you post those results also include the unit of measurement for Vit D and B12.
I'm going to ring now and ask for them going bk to may I did request them weeks ago but no luck.. Thanks again I will post on here as soon as I get them..
Hopefully you wont have a problem but if you do just remind them that in the UK we are legally entitled to our results (and no charge can be made). I just call into my surgery, ask the receptionist, they're printed immediately and handed over with a smile, no questions asked, about one minute later. (It would be nice if the doctors were as good! )
Please disregard your surgery's message. They don't know what they're doing.
Please change your doctor but first of all go to the surgery (if you're able to) and ask for a print-out of all your blood tests re thyroid. Make sure the ranges are also stated. Ranges are in brackets after the results.
I am not medically qualified but the majority of doctors seem to know nothing at all except to look at a TSH result and, if low, will assume you're hyPERthyroid.
You are undertreated and that's why you feel awful.
You need a blood test and it has to be the very earliest, fasting (you can drink water) and if taking thyroid hormones allow a 24 hour gap between dose and test and take afterwards.
I have my thyroid gland and those who've had theirs removed will respond when they read your post. You will find that few, if any, doctors have any knowledge except to 'think' that a low TSH means we're hyper and not hypothyroid.
You need a test (you can get a private home test and I'll give a link - just in case you need it.
You are feeling very unwell because you aren't getting the hormones required to improve your health (many doctors only concentrate on the TSH alone). If TSH is low, they reduce dose.
Ask if you can have a blood test tomorrow at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between dose and test. A starting dose is 50mcg with increments of 25mcg levo every six week until TSH is 1 or lower.
For information - you can have a private home blood test and I'll give a link and I do feel sorry for you as I know how debilitating we can become.
A Full Thyroid Function Test is:
TSH, T4, T3, FT3, FT4 and thyroid antibodies.
Always get a print-out for your own records. Always put in the ranges as labs differ.
Thanks for the reply my bloods were done on Mon 23rd sep obviously as before my TSH must be suppressed as it has been since May as you rightly say this is why they are reducing my levo.. I've just been on to them about results going bk to may for print outs but my bloods in May July Aug were done by my surgeon at the hospital and no information as Been passed to my gp so I need to request them from my surgeon at the hospital luckily I'm seeing him on Mon 30th sep but not chancing him to do it I'm rining his secratery to request them.. Again should we have our blood pressure checked when we have our blood done..
Yes, speak to surgeon's secretary. If you've been having blood pressure problems then doctor should check. If not it may not be necessary.
Once upon a time, doctors only took note of our symptoms and increased or decreased dose according to them. Nowadys I believe all emphasis is upon a TSH result and not symptoms.
These are details of private home blood tests. If you decide, make sure you are well hydrated before and that hands/arms are warm. Allow a 24 hour gap between thyroid hormones and test and take afterwards.
I was started on 125mg in May after my op the dose as Been coming down since then now today I'm told to reduce to 50mg..no app to see doctor no how are you feeling nothing of course I am seeing my surgeon on Monday next week but to be honest he sounds like he doesn't know much either.. I asked him if I shouldn't have my anti bodies tested again as I know you can attack other parts of your body he just said you don't need that test as you have no thiyroid now...... Really is that right.... 🙄🙄🙄
A healthy thyroid gland produces T4 and T3 i.e. thyroxine and triiodothyronine(.
We get prescribed levothyroxine (T4) and it is supposed to convert to T3 and it is T3 which is needed in our millions of T3 receptor cells and brain and heart contain the most.
Just as point of reference a fully functioning working thyroid would be supporting you daily with approximately 100 T4 - Levothyroxine + 10 T3 - Liothyronine. It just seems like common sense to me that when there has been a medical intervention and the thyroid surgically removed or ablated with Radioactive Iodine that both these essential hormones need to be on the patients prescription for if, and probably when required.
Some people can get by on T4 alone, some people simply stop, at some point in time, being able to convert the T4 into T3 which is the hormone that the body runs on, and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient, which generally sees both hormones in the upper quadrants of the respective ranges.
Levothyroxine is a prohormone and the body needs to be able to convert it into the active hormone T3 which is said to have the effect of 3-4 times more power than Levothyroxine.
Conversion of any thyroid hormone replacement can be compromised if your core strength is compromised and ferritin, folate B12 and vitamin D all need to be optimal in the ranges.
Graves Disease is an autoimmune disease and as such, it's for life, it's in your blood. Your thyroid was the victim of an attack by your own immune system, and it's because the thyroid is such a major and important gland that the symptoms experienced can and sometimes are, life threatening.
Graves Disease has TSI / Trab antibodies that can sit on the TSH giving the impression that you are overmedicated. As they sat on your TSH driving your metabolising into overactivity when first diagnosed, they can still be there months and years after surgery or ablation, still driving overactivity, but now the gland has been removed and the loop broken, and it's mechanism is of no value. It is therefore imperative that you are dosed and monitored on T4 and T3 blood tests, your TSH is not a reliable measure of anything.
It is still somewhat early days from your surgery, but it does seem that you are undermedicated and I can only agree with what has already been stated.
You might like to take a look at the Elaine Moore website. This lady has Graves and went through RAI in the late 1990's. She found no help or advice herself so wrote a book to help people with the same condition. There is now a well respected and researched stateside website, the medical terminology maybe a little different, but there are many sections dealing with autoimmune conditions, including lifestyle, food, relaxation, holistic and alternative treatments. There is also an open forum, much like this amazing site, where people can read, learn, ask questions and find support from fellow Graves patients.
I see from your past posts that you have previously been diagnosed with hyperthyroidism. In this situation your TSH would have been extremely low. After thyroidectomy your TSH might not recover for months. If your TSH was extremely low for a long time it may never recover and will always be low.
The fact that you have no thyroid and yet your dose of Levo is being reduced and reduced and reduced suggests to me that you are being dosed according to your TSH. You need to know your Free T4 and Free T3. If those drop too low you are likely to end up in myxoedema crisis or coma, which is a life threatening condition. (If I understand correctly, myxoedema coma doesn't necessarily involve the patient in being in a coma.)
It is urgent that you find out which blood tests have been done because the continual reduction of your Levo when you have no thyroid is insane. Whatever the outcome of this you need to change your doctor. Try to find one with a brain and a heart.
Do a web search for myxedema (US spelling) coma or myxedema crisis.
When you go to the doctor take someone with you who understands your situation and can be forceful on your behalf. Because allowing this situation to continue could kill you.
diogenes Do you have any suggestions for good links on this subject that can be printed out and shown to a GP?
I'm receiving print outs this fri so I will see then what blood tests have been done I'll post them on here..unfortunately I live alone and have no one who can attend my doctors appointments with me..also my first set of bloods done in May was done by my surgeon as was the other ones he reduced my doses the bloods I had done this Monday prob show a suppressed TSH...and my GP as reduced it this time..as my surgeon has the other times..i have hyper symptoms when taking the Levo I didn't have them when I had the 24hours off them for bloods...🤔🤔🤔
There are things that could be causing apparent hyper symptoms despite you having no thyroid.
Some that come to mind - don't assume this list is complete :
1) Low nutrients. Just as an example - low iron and/or ferritin give me symptoms I associate with being over or under-medicated for hypothyroidism. For other people vitamin B12, folate and/or vitamin D make them think their thyroid meds are wrongly dosed. We're all different, and we need to find out what is affecting us.
2) High or low cortisol. It isn't possible to say on the basis of symptoms whether cortisol is low or high, it would need to be tested. The best test for cortisol is a saliva test with four samples being produced during a single day at certain times. A saliva test which also includes DHEA is essential. Not all saliva cortisol tests include DHEA and they should be avoided.
3) Have you had any changes of brand of Levo since you were put on it? Filler and excipients in tablets/capsules can cause all sorts of problems for some people as a result of intolerance or allergy.
At the moment I simply cannot believe that you are still "hyper" four or five months after your thyroid was removed. However, I do believe your TSH may not have recovered after this length of time, and what happens when that is the case depends on the knowledge, or lack of it, of your doctors.
I will look in the that....my GP knows I have been really ill for a number of years now I also had hyper parathiyroids in 2004 I'm sick of his and other health care professionals who just don't seem to care I came out of my surgeons clinic last month he refused to do bloods because he could see I was hyper tremors ect..I did make a question list and mentioned T3 and T4 and was I converting I may as well have talked to the wall because his answer was we don't need to do that your still hyper as was asking if I should have my anti bodies tested he said no to that as I had no thiyroid....🙄🙄🙄🙄
I still had hyper symptoms on 75mg as my surgeon noticed at my last app with him.. I'm 5ft2..not slim but not over weight either, also I have a bad time with synthetic medications I could not stomach the anti thiyroid meds. Can't take HRT.. and the pill. I just don't feel well I've had bouts of no sleep then sleeping for 18 hours.. Totally lethargic no energy.. My endo discharged me from his clinic about 2 months ago.. I've never seen him since having my op only my surgeon and gp... I think they keep reducing due to my TSH being suppressed.. 🤔 I live in a very small town we don't have anything like holistic stuff here I'm seeing my surgeon on Monday so I will be asking him what's going on that my dose needs reduced again... 👍👍
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