Hi, I hope you are all hanging on I there. Please can any body HELP, I feel so desperately ill. My Endocrinologist has now changed my meds from..
T4 = 75 mcg 1 daily
T3 = 10 mcg 2 daily. I have been taking these for 6 months. Then she changed them to..
T4 = 50mcg 1 dailly
T3 = 10 mcg 3 daily
I started this dose last Monday after a follow up with her, she wants to try to make me better than I have been, I still have many symptoms from head to toe, she told me that I am a very complex patient and not tolerating the medication.
These are my most recent bloods
Free T4 = 14.5.....pmol/L 11 - 22,6
Free T3 = 6 . 8 ....pmol/L 3. 5 - 6 . 5
TSH 0.01.............mU/L 0.2 - 4.0
She said that my ranges were good. I have asked her to refer me to see a Professor of Endocrinology, as I feel that I am not being medicated adequately and can not carry on being so very ill. She can not answer many of my questions and she also treats diabetic patients, All she keeps doing is alternating my meds to help with my symptoms, but nothing seems to be working and helping me..
Sorry for the long post, but can you please HELP!!
Thank you
kind regards
stay strong
Bubba
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bubbatetley
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How much VitD were you prescribed ? Did your Endo mention the co-factors - VitK2-MK7 and Magnesium ? A suggested dose would be at least 4000 IU's daily and then re-test at the end of winter.
Within the above link is a table detailing the dose required according to the result. Also another chart showing the level needed to prevent certain diseases.
Hi Marz, thank you for the reply. I only take Vitamin D 3,000 IU'S. My Endo never mentioned co-factors, what are these? I am so very unwell, and in a terrible place mentally. I have asked to be referred to a Professor Trainer at the Christie Hospital Manchester, as she doesn't seem to be very knowledgeable and has said i'm a very complex patient, as she cant get my symptoms sorted to make me somewhat well again,. I am 9 years now with this disease and still very ill.
Thank you again for reading my post and being their for all of us.
Your levels of nutrients are low so your hormones will not work well. Please read the posts of SeasideSusie and SlowDragon again and the links they have posted. Take care of ths pennies and the pounds take care of themselves 🤔
When taking VitD the uptake of calcium from food is improved so the K2 ensures it is directed away from arteries and into bones and teeth. Magnesium aids absorption. Follow SeasideSusie - she writes about both daily 💥
I had an Atypical Ductal Hyperplasia and, as a result, have been told I am at higher risk for breast cancer. They wanted to put me on Tamoxifen, but having been through the hot flashes from hell when I went off Estrogen, I said, "No thank you." I found this on the web site you linked to, so now I am taking 5,000 IU of Vitamin D, plus K2 MK7, magnesium, selenium, and zinc.
Glad you found the website helpful. Yes Carol - the lady who created the site - is a breast cancer survivor. So much good info on the website. Do you have their Newsletters ?
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Increasing T3 by 10 mcg at a time is too much. It should be 5 mcg - especially when your FT3 is already over-range. Try reducing it to 25 mcg a day, rather than 30.
Hi Bubba, You've been dealing with these symptoms for two years?? I can see why you aren't feeling well although noticed that Teva may be part of your problem. Have you changed brands? Were you on 50-75 dose for long? Too low except for beginning treatment.
All those deficiencies you still have make it difficult to utilize the hormone. I assume she put you on some T3 so it wouldn't have to go through conversion for that reason. I think you are right, it may not be getting into the cells.
Itching can be a sign of the liver being overwhelmed so you need to detox. You aren't breaking down nutrients so you can't raise ferritin and folate levels . Perhaps you aren't methylating as well so your supplements should be methylcobalamin and methylfolate. Gluten can cause leaky gut which sends your immune system into turmoil but enzymes will go after some of the debris. Look into both digestive and proteolytic enzymes.
Vitamin D is a prohormone and you need good levels to activate other hormones.
No wonder you do not feel well. I know we need better treatment.
Hi Heloise, nice name..I am still on TEVA as my local pharmacies only do this brand, but I am speaking with my GP tomorrow , to see if he can change the BRAND. My Endocrinologist has yet again changed my medication to ,,
Levothyroxine = 50 mcg daily [ previous dosage was Levo = 75 mcg, Liothyronine = 30]
Liothyronine = 30 mcg daily This is what I am on now.
I have been on T4/T3 combination for a year now, but still very symptomatic, in total 9 years since being diagnosed and never feeling well and in a very desperate state of mind
and have thought about suicide, this disease has got me beaten,
She has said im a very complex patient and she thinks maybe I am either not tolerating, or converting the medication.
I have asked for a second opinion to go and see a Professor in Endocrinology, as she seems unable to answer many of my concerns and questions.
I like your name, too but I was hoping your profile would definitely reveal your gender. Female, right?
First, some people cannot handle T4 at all. I know you were good on 100 T4 before and if you had a couple more increases as needed it may have worked out. A normal dose is about 125. If you were ill for a long time as you say you were in not in a healthy condition to use any hormone. Conventional doctors don't go into that unfortunately because it takes too much time I guess or maybe they just don't know.
Some of us are on T3 only. I take 50 mcgs. but I've also been on two grains of NDT, have you thought of trying either? I know the NHS makes it hard. If she suspects T4 isn't good for you, she should stop it entirely and see if T3 only helps.
If you could have gone gluten free it would help relieve the leaky gut. They've got some interesting tests to see what foods are compatible for you.
What about methylation? Are you going to supplement as Slow Dragon worked out for you. You've got to heal your gut. You should be able to heal in about six months.
I'm a type 1 diabetic, & the doctor I see is also a endocrinologist. And in the last two yrs she has been cutting down the amount of thyroxine I take, every thing has been going well & I have been feeling great, until I went to the hospital in September & amount was changed again (lower) she spoke about fine tuning it & the word cancer was mentioned !! But I knew within the first month that this level is not for me, as I've put on weight (having lost 3lbs before the change) & I'm not sleeping well, waking from 3am onwards !! I'm due to have a blood test this Wednesday & will be contacting her to say I have to increase back to previous amount. My T4 was 14 & TSH was 0.22 I don't take anything for T3 as I still have a thyroid. The idea is to get the pituitary gland to respond better. I hope you get answers soon, sorry its been a long post.
Hi Batty, thank you for replying. My symptoms are brain fog, ear pains, nausea, emotional, short tempered, no appetite, constant headaches, upset stomach, hair loss, awful itching, the symptoms are literally from head to toe. Neuropathy in leg. My Endo is saying that I'm a very complex case, and shes struggling to find my sweet spot, nothing seems to be HELPING my wretched symptoms, I have thought of ending my life.
Thank you for all the help and advice I get from here, I would be so lost without you all
Sorry Batty 1, I forgot to ask how long does it take for the change in meds from Levo 75 to down to 50mcg. Also she has upped my T3 from 20mcg to 30mcg
Do you mean how long to start feeling better with the dose change? It's standard to retest 6-8week after starting your new dose to see how things are going and as far as feeling better (for me) it's my mood and lessening of my joint pains that I notice mostly. I think you gotta remember these thyroid pills are not a magic potion and it's really a trial and error type of approach.
I do 6 hours between my first synthyroid/cytomel dose and my second synthyroid/cytomel dose (I'm more flexible with my second dose) but I never exceed 1 HOUR delay on second dose because I have other meds to take .
Hi Bubba, you have my every sympathy. My endocrinologist has also been telling me I am over medicated and has slowly had me dialling down my T4 and T3.
I am now on 100mcg Levo and 10mcg Lio and my recent bloods indicate I am now considerably under medicated:
TSH = 17.7miu/ L (0.35-4.78miu/L)
FT4 = 12.2 pmol/L (10.00-20.00pmol/L)
FT3 = 4.1 pmol/L (3.5-6.5pmol/L)
These are perhaps the worst results I have had since diagnosis 8 years ago!
I'm due in to see him again on Tuesday and have already upped my T4 by 25mcg...
Don't give up hope and just be persistent about how you feel... and definitely ask for a second opinion or demand a referral
I do wish they would have better tuition when deciding what they want to pursue.
The pity is that they place too much emphasis on a low TSH result (it is from the pituitary gland - not thyroid). Their assumption seems to be that if it is very low, we've become hyPERthyroid and reduce dose which, in turn, gives us disabling symptoms.
Tell him, it is symptom relief which is the aim - not 'fitting your TSH into a certain range.
I am not medically qualified bubbatetley and you have my sympathy because the medical professionals have no idea of the suffering we undergo and floundering by ourselves with seemingly no professional input.
My own experience was - (TSH 100 when I, finally, diagnosed myself - no medical professional seemed to know any symptoms at all). I even went under an anaestetic to 'remove' a web from my throat - after op was told I had no web and I asked - why, when I've had a barium swallow and given a diagnosis of a web - why is there no web. There was no answer and I assumed later on that it was actually a swollen thyroid gland.
No wonder we lose trust in the professionals. Also you don't get your money refunded for wrong diagnosis and another gave (before being diagnosed) me a medication which caused so much pain and discomfort in stomach that I stopped it within a couple of days.
I then was given levothyroxine and didn't improve one iota although told - as seems to be usual 'your blood results are fine' when I felt worse than before diagnosis. When you get a statement like that and up most of the night trying to control severe palpitations or any other symptoms is awful. Especially if other members of the family have to try to assist you and they, too, cannot figure things out - after all we've been having medical consultations.
When we have any other medical conditions, usually the medication relieves or heals the symptoms.
It seems so simple to treat hypothyroidism- and may be for thousands of people - but for those on this forum usually there's a struggle to understand why as doctors etc say - bloods are normal and we're dismissed. They are also told to prescribe levo alone, so they cannot change as their livelihoods may also be jeopordised.
I found when on levo - I felt so awful and cardiologist (despite the usual and probably good methods for many patients) was puzzled and he was considering putting an implant in my heart and, by chance, the Endocrinologist added T3 to T4 and I had an immediate change for the better (I'm not saying that this will happen to everyone) and never needed an implant).
At my next blood test blood test I was phoned at home to tell me to stop T3 altogether and I refused so told to reduce dose. So I reduced T4 and had another improvement. Eventually I found that T3 alone resolved all my symptoms and put me on the road to recovery. I will also state, again, that it may not work for everyone but many scientists have found that a T4/T3 works for many people.
I really believe that if patients are struggling to get back to some normality in their health should be permitted to try alternatives. Either T4/T3, T3 alone or NDT (NDT is another which suits many and returns their health but removed through False Statements). Many members source their own.
Thankyou Shaws for the reply. I am on T4 Levo 75 mcg daily and T3 Liothyronine 20mcg daily, but I am splitting the dose of T3 as I don't want to over load. I have been on T4 and T3 for a year now, with some tweaking, but still very ill,
I have now asked to be referred to a Professor of Endo, as my consultant cant seem to answer my questions . I have had thus disease for 9 years now, and not getting any better. HELP!!!!!
All of us are so different in our needs. The more I reduced T4 the better I became. I now take T3 alone once daily.
I think some people's bodies don't like T4 as it is synthetic and has to convert into T3 and may not be able too effectively.
As we know thousands if not millions of people worldwide take levo and seem to be fine on it.
For us who don't, sometimes an alternative - like NDT - which used to be prescribed by the NHS but due to False Statements made by those who should know better removed it from being prescribed. Just as they also removed T3 - without notice and causing immense worry to those who cannot function without it.
This is way too low and should be half way through range. Low ferritin can suggest iron deficiency anaemia so you need a full blood count and an iron panel. Ask your GP to do these.
B12 level [XE2pf] = 380 ng/L [ 211. 0 - 911. 0]
This is too low. Check to see if you have any symptoms of B12 deficiency here:
If you do then list them to discuss with your GP and ask to be tested for B12 deficiency and pernicious anaemia. Many people with a B12 level in the 300s have been found to need B12 injections.
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
So if you don't have any signs of B12 deficiency then you would be advised to supplement to raise your level.
Folate level [ 42U5] = 5 .0 ug/L [ 3.0 - 14. 4]
This is very low, only just scraped into range. Folate should be at least half way through range. Eating folate rich foods can help, also taking a good B Complex containing methyfolate (not folic acid) and methylcobalamin (not cyanocobalamin) will help improve your level. It will also improve your B12 level. Consider Thorne Basic B or Igennus Super B.
If you do have signs of B12 deficiency do not start taking a B Complex (or folate/folic acid) before further testing as it will mask signs of it and skew results. B12 injections or supplementation should be started before the B Complex if necessary.
Vitamin D 50 . 6 nmol/L Total 250H
Then you said: hi SlowDragon my Vitamin D level is 68.6 nmol/L
Which is it? Either are too low and it's recommended by the Vit D Council/Vit D Society that we should aim for 100-150nmol/L.
Serum Cortisol level = 399 nmol/L [184 - 623]
Can't help with that.
* When were all these tested?
* Did you get thyroid antibodies tested?
These are my most recent bloods
Free T4 = 14.5.....pmol/L 11 - 22,6
Free T3 = 6 . 8 ....pmol/L 3. 5 - 6 . 5
TSH 0.01.............mU/L 0.2 - 4.0
We're all different where we need our levels to be when on combination thyroid hormone replacement. If those were my results I'd need my FT3 a bit lower and I'd need FT4 higher in range.
I did ask when these tests were done, if they were done recently then that's fine, if they were done a few months ago then the levels might not be appropriate now.
B12/Folate
First of all you need to check to see if you have any signs of B12 deficiency from the link I gave. If you do then you need to see your doctor about further testing as explained.
If you don't have any signs of B12 deficiency then I have suggested 2 brands of B Complex that you could choose from.
Ferritin
For your low ferritin level you need to ask your GP to check for iron deficiency anaemia as I said in that reply. If you have it then your GP will prescribe some iron tablets. I can't tell you what to take for iron because it's too complicated.
Vit D
For your Vit D I have asked you what is the correct result and you haven't answered so I can't tell you what dose to supplement without knowing your current level.
Thyroid antibodies
You haven't answered if these have been tested. If they are positive and you have autoimmune thyroid disease (Hashimoto's) then the form of Vit D supplement becomes more important.
I feel you, and I am amazed at the difference in health care. I have genuinely been prescribed thyroxine 100mg for years and I have never had any input from anywhere. I also feel like I am so tired of being ill. Having no quality of life and still feeling failed. If all those blood results are leading you to get the right treatment then persue it like a dog with a bone.
With the lab results you posted, no wonder you feel so awful. You are terribly undermedicated. Go over those results with your doctor next time out and tell him that you have goals: TSH to be under 1, and FT3 and FT4 to be in the upper third of the way through their ranges.
You say you have upset stomach....and your vitamin levels are all terrible
Presumably you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
You didn't answer my previous question...
are you on strictly gluten free diet?
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist
approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming Coeliac test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Hi, I have a doc like that, no help whatsoever, I've been on most of the strengths, but all mad me feel so I'll, the pain in my muscles have reduced me to tears.
My doc wanted to send me to see a reumotoligist, I told her you already sent me in the new year,so no joy there ,I think we have to medicate ourselves, but this can be risky, as I found out this morning after taking a new tablet I bought but when you are desperate to you try anything, hope you get to see someone who can help you
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