So ive been feeling awful for the past few months, all the usual hypothyroid symptoms plus headaches, nausea, diarrhoea, mouth ulcers, palpitations. I had my vitamin b12 and TSH checked a few weeks ago by gp - Was told the b12 was ok, and the TSH same as last time (1.37)
Got a private blood test after finding this site as I want to try to understand this disease that I've had for almost 20 years. I'm 35 and I feel about 80. I can see from what I've heard from others that the freeT3 should potentially be higher in the range as the free T4 is at the top of the range so am I not converting well? I'm concerned about the antibodies being so high?? Also my vitamin d is insufficient which is a concern with the amount of sun I'm getting and I take a combined vit d, zinc, calcium, magnesium tablet every day.
I cant get a telephone consult with a gp til 16th July. I would love some help with what I should be asking for. I take 175mcg levo at the moment which has been unchanged since I had my final baby in 2018. I have considered asking for T3 if this will help but seen from others it's unlikely
Ft4 is not near the top of the range. The top of the range is 22 and your result is 16.9. The range is 12 to 22 so 16. 9 is just about halfway through the range.
Your Ft3 is 4.5. Halfway through the Ft3 range is 4.95 so you are not so far off.
Your tsh at 2.49 is high for someone on levo.
A dose increase in the first instance would be best. Once tsh is down around 1 then look again at your frees to see how we'll you are converting.
Oh! you poor thing. Hypo and a new baby and I don't know how you coped.
Are you aware that all blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards.
Members will be along soon to comment on your low vitamin/mineral results
I really do not know why they don't prescribe T3 along with T4. I know it is because the cost of T3 went sky high. I think because the majority of hypo people are female that the professionals just don't bother. I was fortunate to have T3 added to T4 and immediately the change in me was instant, from feeling so unwell to relief of symptoms and it had an instant good effect.
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of 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
Did you know that the cause of your hypothyroidism is due to autoimmune thyroid disease also called Hashimoto’s?
high antibodies confirms this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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 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
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
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I would say that a TSH of 2.49 is not at all the same as last time (1.37?).
I''d say that's quite a significant rise actually.
Which would suggest you are needing more thyroxine .
As Lalatoot said,your T4 is barely 50% through that range ,22 would be 'at the top of the range'.
Your T3 is similar. So you could be ok at converting , but i don't think you can answer the conversion question properly until you are taking enough Levo.
I think you should ask for an increase in Levo, there is plenty of room in the Lab Reference Ranges for tsh to be lower and T4/T3 to be higher.
There are links on here somewhere to NHS guides that say they should aim to get TSH lower than your is.
Have you thought about getting your historic medical records so you can see what your levels have been over time?
I've been on Levo 17yrs and have recently got all my records. It's very enlightening to see the actual numbers, and well worth the trouble of getting them.
As regards High Antibodies, personally i think it's all 'relative' . Mine were 194 last time anybody checked, but i consider that low because they used to be >3000. Opinions differ, but i'm not convinced there is anything you can 'do' about them anyway.
Edit; I wouldn't consider trying T3 until you have got FT4 higher on Levothyroxine. Then see how you feel. Any mention of T3 tends to frighten Gp's, so i'd wait until you are sure you need to go there. If you do need it it's a massive hassle to get ,from what i read on here, and it looks to be getting harder not easier. So if a higher dose of Levo works for you it's much simpler, and cheaper.
Thankyou . They told me the same as last time meaning from my previous results with them. I've gotten the higher result from my private bloods. I've got a phone call with them this morning ( hard work to get it as not an emergency) but I feel dreadful I cant carry on like this.
I have been wanting to get my records for a while but unsure how easy it is to go about doing so?
I decided to get my records this year by using the old fashioned SAR (Subject Access Request) it took about 2 months. It should take 28 days , but there was a bit of confusion because i'm awkward and dont 'do' Apps and smart phones !
I Asked the reception for an SAR form, and then you need 2 forms of I.D. to verify who you are. It takes them a while because they have to go through your records and redact any references to third parties, (which usually just means crossing out the word 'son' or 'daughter'), or anything that would cause harm to you or others.
On the form it asks you to specify what condition or date you are interested in. This is to help them do it quicker , but i don't think it's in your interest's to do it this way. It's much better to get the whole lot at once . Just ignore the 'tick box' and write 'all test results ,and consultations from [date] to present.
You don't have to give a reason , but i did, it's all now part of my records including the SAR.
I said i wanted to see the trend of my tsh/FT4/FT3 results over time, how they correlated to other health conditions associated with autoimmune Hypothyroidism, and that i was becoming concerned that the NHS guidelines were not effective in treating my thyroid condition, and was considering taking responsibility for my own thyroid hormone replacement.
They gave me everything from about 1990. it was put on a disk with a password.
There are 'on line' ways to get access, i think you have to apply for 'enhanced access' to see blood test results.
( but i don't know if you get as much of the old detail's as i did. I got photocopies of all the paper stuff in mine.)
Thankyou. I have always had the 1st slots of thd day and dont take my meds beforehand, both of the results were from 8 in the morning so I have no idea why they differ so much. I will try to get my butt in gear to sort out my records! Thanks for the advice x
That's what I lack in, I feel like I dony want to tell them their job, but equally it's not ok that I'm not getting the tests and answers that i need, they have never tested my vitamin levels before i just think its shocking. I'm wondering if i have pernicious anemia with the results I've got. But unsure whether to just blurt that out to the gp - who still hasnt called 🤦♀️ x
So as predicted that was totally pointless. She said they would organise their own tests, she doesnt trust the results, said that my vitamins are in range so I wont get symptoms which I am. She said I need to look at other factors such as sleep and mood as that's the problem. Im so fed up and frustrated.
It may help your confidence when you realise Gp's when at medical school probably get an afternoon on the whole endocrine system,and maybe an hour on 'the thyroid'.
I'll bet £50 that you have already done more research than that....... and you have lived with it for 20 yrs which is longer than me.
"Dont let the Bas**rd's grind you down. ~Norman Stanley Fletcher~Porridge"
I have done the 'sleep and mood' journey fully with CFS/ME therapists ~and some of it is useful~ but it wont replace your thyroid hormones.
They make you feel like this because it gets you off the phone quickly , and they are overworked, and don't understand thyroids and need to feel like they are in control and helping, but it takes a rare Gp to admit how much they don't understand.............. but that doesn't mean it's all in your head. The problem is not what's in your head ..... it's what is NOT in theirs.
Getting your history will help you feel more in the driving seat, and then you can argue back.
It's so unfair you have to do all this work on your own, while you feel like death warmed up and are looking after kid's.
xx sending you a (((hug)))
Keep asking about optimum vitamin levels on here. NHS ideas on 'normal ' are not fit for purpose, just like NHS ideas on Levo being good enough for everyone.
Latest NHS guidelines on thyroid disease management admit that approx 15% of patients do not do well on Levothyroxine alone.
Don't feel powerless . you have just made them run more blood test's that they wouldn't have without you pushing. That is a result. It's a long road , but you are not alone , and it's not 'in your head'.
Thanks for the love I really appreciate it ❤ just so frustrating she was not listening to me at all at one point she said ' well take some supplements then' 🤦♀️ calling me on Thurs with the results - cant wait. 🙄Very much hoping she doesnt speak to me in that patronising manner again ' covid is stressful, 99% sure there is nothing that will come back, this is all because you are tired 😡🤦♀️' I just need to not back down and stay calm and strong! Thankyou again for understanding x
The more thyroid patients keep talking to each other and sharing information, the more insecure these uneducated GP's are going to start feeling, and it's about time the 'boot was on the other foot.'
I've jumped over here in light of your comment on that general post ;
No thyroid hormone replacement works well unless vitamins and minerals, ferritin, folate B12 and vitamin D are optimal and this applies if you take Natural Desiccated Thyroid.
NDT contains a fixed ratio of T3 and T4 so you still need to be able to convert the T4 content into T3 which is the hormone that the body runs on, the petrol :
You are taking a relatively high dose of Levothyroxine 175 mcg daily but I think you are struggling to covert this well :
Currently NDT is very hard to buy without a prescription unless you look to the States where I understand there maybe options but I've never gone down this route myself.
i take Thyroid S and currently there is no stock that i know of and think we are looking at around next March for back orders to start being fulfilled.
Once your vitamins and minerals are optimal your conversion of the T4 should improve :
The other option would be to introduce some T3 with a lower T4 dose but there again, you are back having to self source which is, in itself, a stressful place unless you have a recommended trusted supplier.
Read up about Hashimoto's and gain confidence in your own knowledge and maybe ask for a referral to an NHS endocrinologist.
Thyroid uk is the charity who support this forum, and there is a very comprehensive website and they also hold a list of doctors and endocrinologists who are said to be "sympathetic " to thyroid sufferers.
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