Previously been diagnosed hashimoto's, underactive thyroid . I have been waiting to restart levothyroxine after a gap of over a year .The reason for the gap was that my nhs consultant decided that i needed to stop levo to try HRT.! I was, on 100mg and had took it for over a year at that dose.
I was 100kg so i asked to go up. That is when the Consultant did the above.
So last month finally got back on levo......
But the consultation said start at 100mg. Have had problem starting meds previously so started at 25mg.
I took it for about 10 days, felt so awful. Had to stop. The only difference was im taking sertraline and hrt now.
I emailed the secretary and told her of my side effects (had took previously with minimal problem) asking could the other meds be interacting and 3 weeks later get a letter saying :
"obviously not needed, the levothyroxine if side effects, you have not got a pituarity or thyroid problem!!! Nl more prescription.
Stunned, i feel very hopeless as i have had diagnosis previously.
Hi can anyone help with my query please?
Thank you in advance.
My latest result TSH 2 .9
T4 11.4 (11-22) sorry no other results currently.
Written by
Cherryboo
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I'm very sorry to hear this. Did you ever get on top of your vitamin levels and are you now supplementing anything? Low vitamin levels can keep your TSH low and raising them to OPTIMAL can bring it back up.
Intolerance of thyroid hormone can be due to low vitamin levels caused by poor vit absorption from low stomach acid. Also, a low dose of Levo after you have been hypo for so long can be hard to tolerate as its not enough to make up for the thyroid hormone you need. Symptoms on low doses of Levo are common especially if you have been untreated for a long time.
Are you now gluten/dairy free? I see you have Hashi's.
I would get a second opinion from a less sadistic Endo.
Thank you so much for your quick reply and explanation of what it could be, i know its late. I would of tolerated most things as desperate to get back on a regime but i just couldnt carry on with it, and the consultant completely disaregared my query about hrt +sertraline +levothyroxine.
I have a recent scan of goitre , high antibodies so i don't understand how she can say i do not have a thyroid problem because of side effects?? .
I do take supplements. But haven't had recent vitamins tests so can't say as the levels.
I Tried gluten free but made little difference to me.
What brand did you get? Teva brand upsets many people.
Could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
You need a different Endo. Email Info@thyroiduk.org for a list and find one near you.
The symptoms you describe would not be uncommon in someone who has previously been taking Levo and been forced to stop treatment for a year. Your body has been forced to adapt to little thyroid hormone and its just over reacting now it has been given just a small amount.
You really do need to get the vitamin levels checked to be sure they are at optimal levels which will help.
You could try a lactose free brand which in small doses would be Teva that suits some but not all.
Unfortunately other than that, you would just need to take very small amounts and rest up while you get back onto a better dose and the symptoms subside, and they will subside but it takes time. Your Endo has a lot to answer for.
I've only recently started levothyroxine and - if it is any help at all - you could cut your 25mg in half with a pill cutter. This is how I've started due to having a heart condition. Might be worth a shot. The medics are covering their arses it seems.
When it comes to Endos check they are not diabetes specialists - ergo busy doing diabetes stuff and not terribly well versed in thyroid issues....... Absolutely shocking treatment.
Thank you for the reply really appreciated. I agree. I do not know how to disagree with them, a plausable argument or really stand up for my self. Thank god for you guys on here x
Wow! I can relate! I have had doctors, both conventional and alternative jack around with my thyroid and HRT so much and it is awful. I finally have my estrogen on board and have been consistent with it for several months with no changes. I am now trying once again to get my thyroid in an optimal range.
I am trying not to take an antidepressant, but some days I wonder if I should until I get this sorted out. They have not helped in the past, so I just haven't gone down that route recently. If they did work for me, I would gladly take one to feel somewhat normal.
I have an gynecologist prescribing my estrogen. I had a hysterectomy and don't take progesterone. Thank goodness, because it was not my friend when I tried.
I have an endocrinologist prescribing my thyroid. I started on 5mcg T3 and felt great for a week or so. Then i didn't. He then added 25mcg of T4, then 37.5mcg, and today I started 50mcg. today. The ups and downs of any hormone changes are not fun. I just hope I get rid of the brain fog and fatigue. I have a lot of insomnia, so hoping that goes away as well.
The only thing I can suggest is start low and build up. I am guessing you feel awful because of your low thyroid production and not the T4 itself.
2 years ago your B12, folate were too low and especially ferritin was TERRIBLE …severely deficient
Serum vitamin B12 level 291 ng/L [197.0 - 771.0]
Serum folate level 10.3 ug/L [2.0 - 18.7]
Serum ferritin level 16.4 ug/L [20.0 - 260.0]
No vitamin D tested
STRONGLY recommend getting these tested now via GP or via private testing
What vitamin supplements are you currently taking?
When were these last tested
Levothyroxine needs OPTIMAL vitamin levels
Ferritin at least over 70ug/L
Ferritin under 30 is deficient
B12 at least over 500
Folate near top of range
Vitamin D at least over 80nmol
Low ferritin in particular lowers TSH
Being hypothyroid frequently results in low vitamin levels because when hypo we frequently develop low stomach acid and this leads to poor nutrient absorption
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat daily, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
unfortunately i think you've accidentally shot yourself in the foot by raising the issue of side effects so soon .. they had only just re-prescribed 100mcg and given your previous history on levo/ levo+T3 .i think it is pretty unlikely they will agree to prescribe any further treatment for hypothyroidism unless your fT4 goes below range.
They will probably say they have already tried everything thyroid wise and none of it has improved your symptoms .
December 2019.
They originally started levo based on one slightly under range fT4 result:
They increased dose quite efficiently during 2020~ 25/50/75mcg (mostly TEVA i think) then 100mcg (not TEVA) ~
TSH 0.01 [0.27 - 4.5]
fT4 18.4 [11.0 - 23.0] 62% ~ " still don't feel well. GP has said they are ok no further action".
So they allowed you to stay on 100mcg despite TSH 0.01 , and didn't insist you reduce dose due to this .. which they usually would do.
They made a referral to NHS endo . (in posts here you said all of these doses made you feel worse than before you started levo, and you make no mention of any improvements from taking levo)
August 2020.
You went private (before your NHS endo appt came through) ,and Private endo prescribed T3 with reduced levo 75mcg (TEVA)
you stopped T3 after ? a few days as you felt unwell on it (posts not very clear about how long what dose T3 you were taking ~ ? a third of a 20mcg tablet)
So from September 2020 you were stuck on 75mcg (Teva?) for a few months .
Levo was increased back to 100mcg ~tested after aprox. 8 weeks April ish:
TSH 1.7 [0.27 - 4.5]
fT4 13.6 [11 - 23]
but then 2 months later (june 2021) ....instead of increasing levo to 125mcg (which would have been more sensible, based on those results) , they stopped it 'to try HRT' ~
"endocrinology said that there was only one record of low T4 result and that could be caused by stress or depression or many other things .That she wanted to look into other things" .
and levo wasn't restarted because "fT4 was 14 [12-22] after 4 weeks "
you said you had "now seen 3 different NHS Endo's in 8 months" .
You TSH didn't rise over 2.9 when you were off levo ?
and your fT4 hasn't gone below range again ?.... now 11.4 (11-22)
So from NHS point of view ~ there is not much justification to put you back on levo, because it didn't appear to help you.
and now when it has been prescribed again .. you had to stop it straight away as it made you feel worse ... (prescribed 100mcg but only started with 25mcg (Mercury) and stopped after just 10 days).
Was it prescribed this time by NHS or private consultant ?
If they are aware of this previous history, i doubt the consultant will agree to give it you back now unless you have under range fT4 results in future. If fT4 continues to stay in range , i think you may have to find another private prescription if you want to take thyroid hormone replacement , (or self source it without )
Your low ferritin has not really improved throughout all this time ..... i think it would be a gd idea to spend more time focussing on improving and testing your vitamin levels for now, rather than repeating the previous thyroid hormone experiment.
As regards getting any thyroid hormone prescribed again at the moment ?
well .. realistically , it didn't help in 2020/ 2021, regardless of what brand of Levo you were on .
and improving the low fT4 didn't help much ~ on 100mcg with TSH 0.01 / fT4 18.4 [11- 23] fT4 rose significantly to 62% ~ but you still felt so horrible you went private at that point to try adding T3.
But trying T3 at that point before sorting those vitamin levels out first was probably not the right move.
so ....... unless you do something different this time (such as improving those vitamins first ?) then restarting levo seems unlikely to give a different outcome than you got last time you tried it .
With such terrible vitamin levels it’s hardly surprising levothyroxine wasn’t resolving all symptoms
Once you were on 125mcg levothyroxine, and OPTIMAL vitamin levels it would likely have taken at least a year for your body to recover
Frequently dairy free and/or gluten free diet helps or necessary even if not many obvious benefits initially
Suggest you work on vitamin levels for coming months
Get all four at GOOD levels and retest thyroid levels again
Then, assuming your results show you need replacement thyroid hormones, you should be able to restart levothyroxine
You may initially need to split 25mcg tablets in half and take half dose morning and half dose bedtime…or even split as 1/4 tablet taken 4 times a day
If your body’s desperate for thyroid hormones it can be difficult to tolerate starting and increasing dose back upwards…….and has to be added and increased slowly
Thank you for taking the time to look at previous posts .Must have taken a while .
I'm sure people are frustrated with me , imagine being me .
I was still not feeling good . Yes I clearly have shot my self in the foot so too speak , but if I do not need it at the moment as the consultant suggests due to the side effects I experienced, I think it's better i did.
If that's correct ?from the diabetes specialist.?
Are you a endocrinologist? something you can answer ?
I can't see how anyone could continue with the side effects I had .
There is no way I could continue.!so disappointed after waiting all this time to restart.
So I started hrt that helped with hot flushes, gyne issues .
Sleep is somewhat better also so very grateful for that.
But the other symptoms are debilitating me still .I guess it might not be thyroid but I have hasimotos and it must be causing symptoms?
I did not experience such awful side effects previously when I took levo for around a year previously. addition of her ??
i just asked about the interacting of sertraline+hrt+levothyroxine,that was my query to the secretary.
I felt so hyper and not with it , face bright red, headaches , the only difference previously in 2021 was that I took it in the morning.
I struggle with meds and sensitivity.
Was it prescribed this time by NHS or private consultant ?
It was prescribed by NHS
"and you said you were being denied medication until after the test.
did you have this 'interference' test done ? what did it involve , and what was the outcome ?"
It involved a blood test at the hospital , the first was lost so waited and waited for contact , had to contact them again for the results and then redo process , the outcome was negative,no interference after months .
Yes they did not want to give me levothyroxine until after the test.
I've tried too find out information about the test but couldn't .
I guess they were trying to see if I needed any treatment at all .
Do you agree ?I can post the letter content if you wish?.Are you a endocrinologist?
Hi cherryboo , no~ definitely NOT an endocrinologist ..lol .
an 'interference' test would suggest they were looking to see if your previous test results had suffered from 'assay interference' ...by sending the blood sample off to be tested using a few different lab processes.. to see if all the results were similar, or if there was some interference to results from one or other of the test methods.
i suppose i just wondered if you had got the test name wrong and it had actually been an 'absorption' test ~ where they give you a large dose of levo to take before the test to see if the fT4 rises as expected .. or if there is a problem with absorption of the tablet ~were you given a tablet to take before this test ?
As for whether the symptoms/ effects on 25mcg mean you don't need them at the moment ... um, i don't honestly know ...
Yes, you certainly have evidence of hashimoto's , but that doesn't necessarily mean you would have any hypothyroid symptoms yet ~ it's fairly common to have raised TPOab and not have any thyroid symptoms ~ raised TPOab just means people are more likely to end up hypothyroid at some point in the future, not that they are actually hypothyroid now.
It is only your low end fT4 levels that were suggesting you have a thyroid problem that might benefit from thyroid hormone replacement 'at the moment' ..... but while they are certainly low .. it's not proof that this level is 'too low for you'... some healthy people will have their usual fT4 levels right at the bottom of the range and a few will be slightly below (it's a 95% population range , meaning they have removed the lowest 2.5% of healthy people to get that range ~ and also removed the e highest 2.5% of healthy people)
I'm not very good at 'vitamins' ....but that is where i think you should start for now and get them optimal before looking at the thyroid results again once the vitamin problems are much improved... i saw there has been lots of specific advice on what to do about them on your previous posts.
p.s ~ start keeping an accurate dairy with dates of any changes you make from now on , and dates of any tests etc .. your previous posts have some confusing information that doesn't agree with what you wrote on earlier posts .. eg. this post you said you'd been ok on 100cg for over a year , but it was actually 4 months on 100mcg ( + a brief period just before you added T3) ... and some of your test information was very hard to unravel .. ie date of test / what dose /time of last dose, were often missing .... which could mean you get some misleading opinions about what is best to do next .
This might come off as not helpful but there have been many times that I have pushed through really awful.side effects for weeks & weeks
It helps in two ways -
If it never changes, I 100% know what can not work. Just can not..There is peace and freedom in that. And fruitful knowledge. It sincerely helps down the line.
And sometimes things really even out during that time period & I sincerely thought they would not - would have put huge money down they would not have.
So either end brings gifts.
(I have had to make a lot of changes.due to border issues and at times doctors being the ',Keep of the Goods'. )
--+++++++++
I would do this in an instant, if I had a thyroid -
Why don't you experiment with glandulars at this point? They would give you the freedom to experiment slowly and raise on your terms.
There is one I took before my thyroidectomy where many reviewers with a thyroid, but hypothyroid, have had tremendous results.
All the best going forward. I hope it all works out.
Hi litatamon , very interesting.thankyou .Will read up on that.
I couldn't carry on feeling like that I'm a full-time carer and need to be okay .
I've previously battled through with side effects for a while I think it was 2021 when I had a steady period of taking levothyroxine , side effects none as intense as this time though .
Unfortunately I think the combination of meds I currently take might have contributed .
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