Hi sorry if my post doesn’t make sense, I am new to this illness. I was diagnosed with a grotire in 2003 during pregnancy along with B12 def, bloods taken and was told all ok with thyroid. Again through out the years I become unwell which I now know is thyroid symptoms. Was never medically treated in 16 years. 2018 I had problems swallowing abs feeling has though I had a grip around my throat. See ENT on 1st October 2018 and was told i needed thyroid removed ASAP has it was very large and possibly grew into my chest. I had it removed 2 days later. Thankfully it wasn’t cancerous abs was removed with no complications. I was given 200mg Levo right away which I had a bad reaction to, was lowered to 150mg again a bad reaction, finally 100mg and I was ok. Over the following year I felt same no better no worse, then June I suffered horrendous panic attacks and anxiety. Found out I was UA, but meds wasn’t increased has only slightly. Then December 2020 had bloods done and results was in pic. Gp increased my Levo to 200mg which again I couldn’t handle, so dropped to 175mg still can’t ha due but she refuses to lower anymore. Is there another type of meds I can take ? I’ve notice people mention armour which my Gp point blank refused and said never. She said I do not need T3 either. What meds by everyone’s experience should I be on abs dosage ? I feel dreadful every day. I’ve gained 4 stone within 8 months. I use to work out daily but now I have zero energy to work out. I’ve gone from being a fun energetic mum to a mum that always says no or I can’t. My kids are now suffering because of me and this stupid illness. Really sorry if it’s a post you have read a million times. I just don’t understand any of it. They removed this from my body and sent me on my way with no information what so ever. I also had full bloods done in March with medicheck so I could have T3 tested. This was advice by a group in Facebook which I felt they was very crazy if I’m honest. My
Free T3 3.32 (3.1 - 6.8)
I would truly appreciate any help or advice. Thank you
Written by
edentate
To view profiles and participate in discussions please or .
Welcome to our forum edentate and I am really sorry you have been diagnosed as having hypothyroidism. I am also very sorry that you've had to undergo a path which many on this forum have gone through before finding this forum and the members are very symptathetic as we seem to have all gone through the 'system' of which many of the medical professionals, especially GPs seem to have no knowledge at all about one of the commonest autoimmune disease nor how best to return us to good health.
It could be easier except 'those' who should know better do not prescribe sufficient thyroid hormone replacements to us that would ease our symptoms and make us feel much better.
Few GPs are knowledgeable except to get upset if our TSH is 1 or under. They then assume we've gonehyPERthyroid and reduce our levothyroxine or other replacement hormones.
Other members will be along soon and you will find support onthis forum.
This is the procedure when you go for a blood test:-
1. Always make the earliest possible appointment - even if you've to make it weeks ahead.
2. Allow a gap of 24 hours between your last dose of levothyroxine and the test and take it afterwards.
3. Request TSH (thyroid stimulating hormone) which is highest early a.m. and seems to be the only result GPs look at.and also request Free T4, Free T3 and thyroid antibodies.
GP may not do all of these but you can get a private home test and if you decide to do so, make sure you are well-hydrated a couple of days before and follow hints above. Thyroiduk have names of labs who will do private tests.
4. Also Test B12, Vit D, iron, ferritin and folate and GP may do them - if not you will have to get a private test (I hope he/she does do these for you).
Put your results onto a fresh post for members to comment upon them. We are all in this together and it is a pity all of our 'older' doctors who knew all of the clinical symptoms, diagnosed us by them, and we were given a trial of NDT (natural dessicated thyroid hormones) in use since 1892 and from then on people did not die from then on.
Unfortunately the 'Organisation' - for some unknown reason to me - withdrew NDT, and have also withdrawn T3 (liothyronine which is the active thyroid hormone needed in the millions of T3 receptor cells )- brain and heart contain the most.
We have to educate ourselves as best we can and members are very helpful indeed.
It is a slow process but we can recover our health - despite the guidelines.
I am aware millions seem to do o.k. on levothyroxine and don't have problems, but there is a section in society that cannot recover their health in any way with levo alone. Some options are:-
T3- Liothyronine (withdrawn due to cost)
T4/T3 - Levothyroxine (inactive) Liothyronine (active thyroid hormone) and our brain and heart have the most T3 receptor cells as wel as needed in our whole body.
Always get a print-out of your results, with the ranges and post if you have a query for members to comment upon them.
I’m squinting but I can’t read that TSH / FT4 result—could you let me know what they say please?
I’m thinking you’re undermedicated (that FT3 result would seem to prove it) but it would be good to know what the other thyroid results are.
And have they tested your ferritin levels? Vit B12 / folate / Vit D? All are likely to drop into your boots if you’ve been left undermedicated for any length of time.
Thank you, my December 2020 blood results was done by Gp abs are:Tsh 8.67 (0.27-4.2)
Free T4 11.5 (10.5-24.5)
Folate 1.8 (3.8-9999)
B12 serum 243 (197-771)
I had a B12 injection a week prior to having these bloods, I also supplement B12 oral spray 1000 daily. I have had B12 injections every 3 months for 17yrs has for some reason I do not absorb it naturally. I’m not vegetarian and eat a health balanced diet. I was also prescribed 5mg folic acid to take daily until gp tells me to stop.
I then paid private via medicheck for full thyriod bloods in March 2021 because gp refused to test T3 or do full checks. These results are
So there is around a 3 month time lapse between the NHS test and this Medichecks result from March 2020 :
Your TSH at 10 is highlighted showing it is out of range and you needing more medication.
As your dose of T4 increases your TSH will come down into range and we generally feel better when the TSH is around 1 :
Your T4 is at 15.80 in a range of 12-22 so that's coming in at around 40% through and your T3 at 3.32 is barely in the range at around 5%.
The accepted conversion ratio when on T4 levothyroxine only is 1/3.50-4.50 : with most people preferring to come in at at around 4 or under ;
So if I divide your T3 into your T4 I get around 4.80 showing poor conversion :
Your ferritin needs to over 70 for thyroid hormone conversion : I need mine at around 100 :
Your vitamin D needs to be up at around 100 :
Your B12 active at 70+ ( B12 serum 500+ ) and folate at around 20 :
You mention having B12 shots and not being able to absorb B12 naturally :
I wonder if the same thing applies to T4 thyroid hormone replacement :
I wonder if liquid T4 would be an option ?
I wonder if you need to go T3 only :
So I guess your B12 level is not consistent and presume this may have a bearing on your ability to convert the T4 on a regular basis.
As you will see some of these vitamins and minerals are in the range, so you may not be offered a NHS script, but we need higher than simply being in range numbers as are not not with functioning thyroids and need extra support to convert the T4 into T3 which is the body's fuel. and you are pretty much running on empty.
I think you need to see a specialist and would suggest you ask to be referred to one on the Thyroid uk list ( details on the Thyroid website ) who we know to have some sympathy and understanding of the complications of living without a fully functioning thyroid, let alone not having a thyroid at all.
I find myself supplementing all the above core strength vitamins and minerals on a weekly, daily basis to maintain my levels at optimal levels, and I also take adrenal glandular as well buy my own full spectrum thyroid hormone replacement as I was unable to find any help nor understanding through the conventional NHS route and refused both T3 and Natural Desiccated Thyroid when I requested help with my ill health in around 2016/18.
You are not going mad and your post makes complete sense :
The only thing I don't understand is seeing your blood test as I've enlarged to 500% and now it's a bit distorted but think I see a TSH at 5.65 and a T4 at 11.50 in a range of 10.50-24.50 :
Do you have any other results along with this Medicheck T3 of 3.32 in a range of 3.10 - 6.80 ?
A fully functioning working thyroid would be supporting you daily with trace elements of T1, T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg:
T4 is a storage hormone and needs to be converted by your body into T3 which is the active hormone that runs the body and is said to be about 4 times more powerful than T4 with the average person needing to utilise around 50 T3 daily, just to function.
Your ability to convert the T4 into T3 can be compromised by low ferritin, folate, B12 and vitamin D so we need these vital nutrients tested to see where the levels sit.
Generally speaking we feel better when both T3 and T4 are balanced and in the upper quadrant of the ranges, at around 75% + as the higher your T4 - in theory the higher your T3.
It is low T3 that gives you all those debilitating symptoms that you are struggling with.
As you will see from the above your T4 is barely in the range at some 7% and your T3 is coming in at a similarly low level at some 5% - in fact, I'm not sure even if those % are right as the tiny numbers have confused me !!!
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
I too am without a thyroid and believe both T3 and T4 should be on the patients prescription so that if, and probably when needed it can be prescribed, to restore balance of both T3 and T4 thyroid hormones and to a high enough level to be acceptable to the patient and restore health and well being and give you back your " you" :
Some people can get by on T4 only, some people at some point in time find T4 doesn't seem to work as well as it once did, and some people simply need their T3 and T4 dosed and monitored independently.
It reads as though you may have a problem with increasing your dose of T4- Levothyroxine - there are various brands, and some lactose free, and there is also liquid T4 - have these options been offered and explored ?
There is also synthetic T3 - Liothyronine but doctors are currently not allowed to prescribe this hormone and you will need a referral to an endocrinologist.
In fact I think you need a referral to an endocrinologist as I find it deplorable that your doctor hasn't done anything to help you.
Is there another doctor in this surgery with more understanding of thyroid hormone replacement treatment ?
Some people take Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland. NDT is pig thyroid dried and ground down into tablets referred to as grains and contains a fixed ratio of T3 and T4 ;
Well done for coming onto the forum :
It's the first step to taking back some control and getting your health back on track :
There is a lot to take in and read and understand :
It's a bit like a jigsaw and things do make sense once you have a few cornerstones of information and first and foremost we need a full thyroid blood panel to include TSH, T3, T4. inflammation, antibodies and the vitamins and minerals as detailed above.
Just start a new post with the results and ranges and you will be helped and advised of what it all measn and what your next steps back to better health will be.
If you go onto the Thyroid uk website there is much more information and this is where I started off around 6 years ago :
I now self medicate and monitor my own health and well being and buy my own full spectrum thyroid hormone replacement -but first and foremost we need to try and get the NHS to do the right thing and treat you with the respect and care you deserve, need and are entitled to.
Thank you for taking time to reply, I do appreciate your information and advice. I will certainly read up more.
Story sounds familiar. No thyroid gland + ANY dose of levothyroxine= no energy + severe weight gain. Been through it all and the solution is normally to ditch the levothyroxine and start taking NDT. Doubt you will get this off any doctor as they are under instructions from above (directly from the CCG or BTA, but more likely from Big Pharma) to refuse whatever the doctor thinks personally, despite the fact that every doctor registered with the GMC is under a contradictory instruction from them to inform the patient that he/she should take this medication if he believes it may be beneficial to the health of the patient, irrespective of whether he is allowed to prescribe it or not.
Probably a silly question, but how do you take your levo?
Do you take it on an empty stomach, with a large glass of water, and wait at least one hour before eating or drinking anything other than water?
Do you take your levo at least two hours away from other medication/supplements - four hours from iron, calcium, vit D, magnesium and oestrogen - should you be taking any of those?
And do you do your tests the way shaws out-lines above?
As you're having B12 injections, do you also take a B complex daily? The Bs all work together, so need to be kept balanced. But, if taking a B complex, you need to stop it one week before a blood test, because the biotin can skew the results.
Sorry about all the questions, but difficult to give any meaningful advice without knowing all the details.
Hi thanks for responding. I found taking my medication at night just before best for me. Due to having to take so many other medications. I eat no later then 6:30pm and only have water after 6:30pm no fizzy drinks and I don’t drink tea or coffeee. I take Levo at 10:30pm just before I’m about to go to bed. Only other medication I take which is in morning and during day is. Propanol 80mg SR to subside anxiety symptoms has my heart would constantly race at over 120bmp
Stretaline 100mg for anxiety
Folic acid 5mg daily
B12 oral spray 1000 x 1 day
Iron oral spray 3000 x 1 day
Vit D oral spray 4000 x 1 day
Vit C 1000 tablet
I can also take a 2mg diazepam when my anxiety is bad or I have a panic attack, which is very often now if I’m honest.
I never take any meds 24 hours before bloods, I always manage to get early morning appointments due to school run.
Propanol can affect your conversion. If you need to take a Beta Blocker, it might be a good idea to ask your doctor for one that doesn't affect conversion. Because all your symptoms are due to that low FT3.
Also, if I were you - but then I am rather stroppy! lol - I would ask your doctor why she thinks you don't need T3, when your labs are so clearly showing you do!
Folic acid 5mg daily
B12 oral spray 1000 x 1 day
Rather than taking folic acid, it would be a good idea to take a good B complex with at least 400 mcg methylfolate. Igennus do a good one, and you can find it on Amazon. Just don't forget to stop it a week before a blood test - any blood test - as it can skew the results.
Vit D oral spray 4000 x 1 day
Does your vit D spray contain vit K2-MK7? And, do you also take magnesium? Vit D and magnesium work together, and if you're taking vit D without taking magnesium, it will deplete your magnesium, and that will cause bad symptoms.
Anxiety and panic attacks are hypo symptoms. So, what you need is higher T3 rather than all these drugs. But, I don't suppose your doctor is capable of understanding that. Very few of them are.
I’ve had rows with her over my results. Gp will never test T3 so I went private for those with medicheck. That’s how I managed to get T3 reading. I’ve referred to nice guidelines on T3 and she refuses to issue me any, she states amour or NDT isn’t safe and isn’t on her able to prescribe list. I’ve cried abs begged, all she does is up my Levo dosage she now wants me to increase again to 200mg when I can not even handle 175mg. I suffer from such a high dose of burning in my face. My face feels on fire. So I changed to taking it before bed so I didn’t have to suffer so much. I’m not able to take tablets has I have a absorbtion problem. When I was taking tablet forms of vits I was much worse, I found oral sprays I was managing to absorb a little.
I was diagnosed with gerd last year, not sure what that is. I went for a scan on my gallbladder because I had problems with pain etc. They told me then that it was gerd. If I’m honest it’s my fault I haven’t read up on it. Sometimes it becomes to much, I’m 38 and went from being perfectly fine (bearable) to having thyriod removed and a domino effect of problems and illness followed. Sometimes I do just shut down and try to blank it out, because I end up becoming consumed with it all 24/7 which I feel does not help my mental health. I will read up on gerd now, although I actually dread to. Because it’s another loads of problems I have to add and worry about. My gp called to say I had bloods on the 8th March 2021 and my results was Tsh 6.7
T4 16.1
However I’m so confused because I do not remember having these bloods at gp, also I had private bloods on 5th March. I’m confused to how my Tsh could have dropped from 10.1 to 6.7 in 3 days. Is this possible ? I’m still trying to remember having bloods taken.
GERD is just another name for acid reflux. But it can be caused by either high stomach acid or low stomach acid. Most doctors don't even know that it's possible to have low stomach acid, and automatically assume it's from high stomach acid, and don't bother to actually find out. Hypos usually have low stomach acid rather than high. The symptoms are the same.
If you read that article I gave you the link to, it gives a home test at the end. But, it's nothing to worry about. You can raise your stomach acid by various means, and start digesting and absorbing things correctly again.
Your doctor can't initiate anything other than T4 - Levothyroxine - 20 years ago doctors were able to prescribe NDT or T3 if T4 didn't resolve health issues.
She out of her depth and prescribing beta blockers etc for symptoms she can't resolve with T4 only.
I don't understand why she hasn't referred you to the hospital endocrinology department as it is clear that you need more than is currently on offer in primary care.
It seems you do not tolerate T4 very well - there are multiple brands, some lactose free, some with different fillers, and some people can only take one brand out of several and there is also liquid T4 if absorption is the issue - have any of these avenues been explored ?
I can understand why the GP won't reduce dose ....TSH of 8 and now 10 is clearly confirming under-medication ,as shown by GP's December Low fT4 and current low fT3 levels . So, questions ...
What are the symptoms that mean you can't handle the Levo at the dose needed to get T4 /3 levels up and TSH down ?
GP put dose up from 100 to 200 in response to Dec results, but you couldn't handle it (not surprised .... that's a huge increase all in one go. It might have been better to increase much more gradually so you could get used to it ?) anyway , result is you're on 175mcg now ?
How many weeks had you been taking 175mcg before doing the March medichecks test ?
If it WAS a full 6 weeks on 175mcg and TSH has still gone UP to 10......has GP made any comment about why, even though you're taking a fairly decent sized dose of Levo, you don't seem to be absorbing it very well . ? (you do seem to be absorbing some , as your fT4 has increased from Dec Level.)
And has He offered any solutions ? ie.... there is Liquid Levo available for people who have difficulty absorbing Levo tablets , or have problems caused by sensitivity to the fillers in some of the Levo tablets ... they have to ask for special permission as it's expensive, and they may insist you try all the available tablets brands first, but if it is possible that the problems you had on higher dose are to do with some brands of Levo affecting some people differently, then different brands and ultimately liquid should at least be tried.
I can't help wondering if going from 100 to 200 was just too big a jump, and needed increasing more slowly.
These questions are something that is easier to address than the tricky issue of getting prescribed T3, and should probably be looked at first.
Sorry if this is a bit of a jumble... i'm afraid so is my brain today.
P.s , just to add, GP's not allowed to initiate prescription of T3 in UK ... they are only allowed to continue a prescription if it was started by an (NHS ?) endocrinologist who has confirmed there is a need for it. Usually after a 3 month trial where Endo prescribes.
Also ....Have you considered taking your Levo split into 2 smaller doses morning / night ?
I wonder if this might help , some of us here do take Levo in 2 smaller doses rather than all at once
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hypo hyper thyroid swing 
Hypo to Hyper Thyroid issues 
Hypo thyroid and estrogen 
Hyper thyroid but hypo symptoms
Hypo Thyroid and Sensitive Skin
