Hello everyone since my last posts nothing has changed and in fact I've been getting sicker, the fatigue is even worse and I didn't think that could be possible. I saw an endo through the NHS on the 1st November last month and I don't feel trusting or confident in her care at all. I asked what she thought about certain vitamin levels needing to be optimal for proper thyroid function and she said there wasn't any evidence for that, and that my serum B12 level of 267 was completely fine (since had active b12 results showing really low so I now self inject). I'd been on a 50mcg dose of levo since the end of August and not had an increase, I told her I've been feeling worse since being on it but she just wanted me to stay on that dose! She sent a request for TSH, T3 and cortisol levels. I showed her private blood tests of thyroid and vitamin levels and my female hormone profile but she took no notice. I've since had a letter to say my cortisol level came back as "a little on the low side" at 145 nmol/L (blood test was about 10:30am) and so I have a short synathen test next week. I also had a cortisol test through Blue Horizon and the results for that are the opposite so I'm really confused, I've been thinking I probably have Addisons but now I just don't know.
Cortisol (Saliva) Waking H 37.60 6.0 - 21.0 nmol/L
<6.0 Possible Addison's
Cortisol (Saliva) 12:00 4.46 1.5 - 7.6 nmol/L
Cortisol (Saliva) 16:00 2.07 0 - 5.5 nmol/L
Cortisol (Saliva) Before Bed <1.5 0 - 2.0 nmol/L
I'll go for this short synathen test next week and then the follow up in endo on the 27th Dec but could people please give me some recommended endos in the Yorkshire area, I really can't take anymore of this. I alreay have the list from Thyroid UK but haven't a clue where to go.
Thanks,
Ali x
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Anyone who can recommend a thyroid specialist should contact you via private message only
Have you had the list of recommended thyroid specialists from Thyroid UK?
If not, email Dionne on Monday
Have you got recent Thyroid test results and ranges to add?
50mcg is only a starter dose of Levothyroxine. Suspect you are in desperate need of dose increase
Have you had antibodies tested or vitamins?
What happened at NHS endocrinologist appointment on Nov 1st?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Hi SlowDragon , so sorry it's taken so long to respond - the fatigue and brain fog is getting worse and worse.
I did email Thyroid UK for the list of private endos but I don't know where to start, I was hoping some people on here would have been able to recommend one at least. I'm really not confident that I'm going to get anywhere with the endo I have under the NHS.
I know I have hashimotos already and my vitamin levels were pretty low (always have been), I suspected a b12 deficiency at the start of 2018 and the longer it went on untreated I knew I was dealing with that and so I now self inject b12, take iron and vit c, b complex, vit d+k2 and magnesium.
I don't have my latest NHS results, I forgot to ask for them to be printed. I think my TSH was just under 3 and T3 (I think total was tested) was 1.9. The endo said she wasn't happy with my TSH being that level on levo but my T3 was really good. I still don't think it's good enough though. She put me up to 75mcg levo and I've been on that dose for nearly a week but honestly I feel like levo just makes me feel worse. She also said my short synacthen results were good but my ACTH wasn't even tested so how can she really know for sure! I'm going to carry on taking the 75mcg for another 4 weeks and then do a private test through Medichecks to see where my levels for everything are at and then maybe up my dose again depending on how I feel and the results. Not that the endo will take any notice, she disregarded them at my first appointment, saying she wanted her own doing but then didn't even test for everything. I feel that I need an endo who has my health and me getting well at the forefront of everything (don't we all!) and who is willing to prescribe T£ or NDT because I don't think even on a higher dose that levo is doing anything for me but adding to my symptoms.
Try spacing out the T4 into 3 x 25mcg doses. Take at bedtime, morning and mid afternoon.
See if this improves things.
It is unlikely the T4 will be making you worse, rather it will be a change in your TSH levels and enzyme activity which will affect T3 output.
There is also the issue of low cortisol and so this can be made worse when you take thyroid meds. So the adrenals need to be massaged to make more cortisol. A big one hit dump of any thyroid med can cock this up. Hence it is worth trying to spread the T4 out. Bedtime dosing is also good at helping the adrenals make a more balanced amount of cortisol.
It is a simple thing to try out and wants to be stuck with for a good few weeks. I am not saying this is the total answer, but it may provide some benefit.
Thanks marsaday . I'll give it a go and see what happens. It's going to be tricky doing it though as I take multiple vitamins and minerals through the day which need a gap of 4 hours away from levo :/
I'm currently taking my levo before bed too as taking it through the day made me feel awful too, thought it was better at night but now again I feel worse. I still need to get my adrenals looked in to properly because I had a short synacthen test and was told the results were good but they didn't test my ACTH so how do they know that's ok?... they don't!
I have set this thread up as an experiment. If you do it please post up your results. If it makes you worse please post up the result as well as if you feel a bit better.
I am trying to uncover why T4 can often make people feel not so good and i think it may have something to do with taking a big dose once per day.
Read the quoted post from the hashi's patient i have quoted. His info is pretty interesting.
I'm a little confused as to how taking in multiple times over the course of the day would help as levo is a storage hormone and doesn't get used straight away. Is that something you've looked in to?
Yes and this is the standard info put out by other patients. But if you read the thread there is some good info which explains why and i don't want to retype it here, but it relates to the enzyme activity affecting T3 conversion.
Our body does not just take in a big dose of T4, it is made through the day and night (night time being more important). So big doses have big effects, sometimes not for the better, sometimes for the better. We are all different and it is important to try different approaches if we are getting no where.
my serum B12 level of 267 was completely fine (since had active b12 results showing really low so I now self inject).
What kind of B12 do you inject and how often? There are different kinds - cyanocobalamin, hydroxocobalamin, methylcobalamin - and some people do better on one kind than another. Also, in order to make good use of the B12 you are injecting you need to make sure that your folate level is good. On the subject of folate, this is worth reading :
I've since had a letter to say my cortisol level came back as "a little on the low side" at 145 nmol/L (blood test was about 10:30am) and so I have a short synathen test next week.
Hidden is helpful on the subject of cortisol.
I also had a cortisol test through Blue Horizon and the results for that are the opposite so I'm really confused, I've been thinking I probably have Addisons but now I just don't know.
The blood test for cortisol is not measuring the same thing as saliva testing for cortisol.
Cortisol in blood is a measurement of Cortisol + Corticosteroid-binding globulin (aka Transcortin), so you could call it "Total Cortisol" - although nobody does. Cortisol measured in saliva is just cortisol by itself, so you could call it "Free Cortisol" - although, again, nobody does.
Think of it as the difference between measuring your own weight (Free weight) and measuring your weight plus the weight of a taxi you are sitting in (Total weight). Corticosteroid-Binding Globulin is like the taxi - it carries cortisol around the bloodstream. In saliva you are measuring "Free Weight" i.e your weight without the taxi.
I was SI daily with methylcobalamin and also have an adenosylcobalamin sublingual. I now SI every other day and take the sublingual a few times a week. And I take a b complex with 500ug of folate as my folate was always coming back in range but low. I'm in a B12 deficiency group on Facebook and have researched quite a lot in to B12, also watched the documentary on Youtube.
I've been on vitamin and mineral supplements for a few months now, I was taking them before but never consistently. So I need to see where my levels are at and will do a thyroid ultra vit test again with Medichecks at the end of the month. I'm on 75mcg of levo now so also need to see how that is showing in bloods but my symtoms are much worse!
I had a short synacthen test done and the endo said my results were good but my ACTH wasn't even tested so how do they know there isn't secondary adrenal failure or something else up, they don't. Thank you for explaining the cortisol, it's not going in now because I'm feeling so fatigued but I'll come back to it tomorrow. I need to get my levels looked in to again.
I've had to research so many areas; hashimotos, thyroid, vitamins, EDS, cortisol, MCAD, lyme disease and my brain can't take it anymore. I'm exhausted
The test really needs to be done fasted (apart from water), by 9am at the latest, and having had the most relaxed journey to where the test is being done as possible. Don't speak unless you have to between getting up and doing the test, don't read, don't do anything at all that you mustn't do, don't leave late and have to rush. Don't speak in the waiting room, don't get into road rage etc. You must stay as relaxed as possible until the test is completely over. Make sure that samples for the ACTH test are put on ice and rushed off to the lab.
It would be a good idea to make sure the day before the test that the ACTH test will be included - so phone up (or go there in person) and make sure that you insist on it beforehand. It is often left out, apparently, but is essential for testing adrenal insufficiency caused by problems other than Addison's.
Edit : Take your thyroid meds as usual. If the appointment for your test is after 9am, phone up and reschedule. Preferably it would be between 8am and 9am.
Thank you, I have that document already when I saw you posted it to another person on here.
My test was done at 10:30 or 11, I can't quite remember. And I feel like my cortisol was higher as I had drank the night before (I don't usually drink) and had a higher heart rate than usual so I felt stressed in bed because of that. I was told at my last endo appt on 27th Dec 2018 that my baseline cortisol was 400 and something (can't remember exactly) and that by the end it had risen to over 600. But again, they didn't test ACTH. It doesn't make any sense to me to not test ACTH, it's ridiculous to assume that injecting a synthetic version of ACTH and cortisol levels rising means your adrenals are fine... what if you don't make enough ACTH yourself!? I mean honestly. I knew all this though but didn't say anything at the appt because I was so fatigued, brain fogged and felt like she didn't really know enough herself. My next endo appt is 8 weeks away but I feel I need to see someone privately to get tested and treated properly.
Your level of 400 isn't too bad for that time of day & the fact it rose by 200 shows that your adrenal glands are working fairly well As you rghtly say if helps if they tested your ACTH at the stat of the test to see what that comes back with. I'll message you with a good Endo in Sheffield.
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Urgent help please: Getting an NHS GP to agree to blood tests for a private endocrinologist
Endocrinologist information please
What should be my next step?
Please recommend a good endocrinologist in Southampton 
