I’m new to the site. It was suggested that I make a post following a comment I made replying to another post as I may benefit from some guidance on my current treatment.
I was diagnosed with an underactive thyroid 9 years ago. I have been treated with Levothyroxine throughout. Since 2020 I have been responding less well with steady increase in Levo in response to TSH levels.
I only discovered I had Hashimotos this year following a steady decline in my health - brain fog has been my main symptom. I don’t feel like the person I used to be anymore, I’ve lost my motivation after spending years thriving on juggling demands of life. I’m just not managing as well now.
The decline in health correlates with a high stress job but my treatment was becoming less effective before this. I’m trying to learn what it means to have autoimmune thyroid disease and how to live with this condition.
A recent ultrasound scan showed thyroid changes consistent with Hashis. I have also got an enlarged Parathyroid gland. PTH and Calcium normal but Vit D insufficient. GP wrote to endo who has asked for repeat bloods and scan in 6 months.
I’ve been working with a private GP who practices functional medicine and some lifestyle changes have been made since November.
TSH 6.6 in October (range 0.3-4.5)
Levo was increased from 125mcg to 150mcg
TSH <0.01 in November (same range)
Free T4 36 (range 10-22)
None of my tests have ever been done with fasting or pre-meds as I didn’t know about this then. My Levo was reduced to 125mcg and I am being re-tested in 6 weeks.
This has never happened to me before, I have never been under to over within a matter of weeks. Presumed it was the lifestyle changes.
Can anyone think of another explanation for what is happening here? Thanks for reading.
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Vizslaaddict
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For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Do you always get same brand of levothyroxine
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum especially with Hashimoto’s
What vitamin supplements are you taking
Approx age?
Are you based in U.K.
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
I’ve noted your comments about what blood tests are indicated. I might have to go private as had a lot of push back from GP last time I asked for tests that were not advised by them. I’m happy to do that though.
I’m 38, I live in the UK and I have been on Teva this year prior to this Accord. I’ve always felt like something changed after starting Teva. Supplements include D3/K2 and Zinc. I’m reassured that everything else can be gained from nutrition.
I had a crash in March which coincided with starting Teva but it was never investigated properly and TSH was only slightly off. I was later told that my meds should have been increased though.
Wondering now whether my health decline could be due to the brand change. Prior to this I was managing life despite fluctuating symptoms.
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets.
Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Well, the other obvious explanation is that it's because you have Hashi's.
With Hashi's, your immune system is hell-bent on slowly destroying your thyroid, with periodic attacks on it.
During the attack, the dying cells release their stock of thyroid hormone into the blood, causing FT4 and FT3 levels to rise sharply. It's what we call a Hashi's 'hyper' swing - although some people, for some reason, call it a Hashi's flare, which tends to be confusing.
The increased levels are only temporary. And sooner or later, the excess hormone will be used up or excreted, and you will become hypo again.
Unfortunately, doctors don't seem to know anything about that...
Hello greygoose I’ve never heard of a Hashis hyper swing. Does this have a specific trigger or does it occur randomly? I had some withdrawal from caffeine and I did wonder whether I might have inadvertently caused some stress. I feel like I’ve got a lot to learn. It’ll be interesting to see what the next bloods show. Appreciate the reply.
As far as we know, it happens randomly. Although some people think gluten could trigger it. I don't think there's any proof of that, but worth trying a gluten-free diet to see if it helps with anything.
Vizslaaddict Teva also contains acacia powder as a filler which can affect people badly. I had that issue about 12 years ago.
I then went onto 100mcgm Accord until I had issues with under dosing. I now take Vencamil 112.5mcgm and about to retest to check my T4 level which was much too low on Accord. Unfortunately, having antibodies- Hashimotos does seem to complicate issues as the antibodies fluctuate. Hope things improve for you.
Hello there crimple, thanks for replying. I’m going to ask to be put back on accord only tomorrow and hopefully my repeat bloods might show some better response to this. I’ve learnt so much just from this post.
For a full list of thyroid hormone medicines in the UK:
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Having had Hashi's myself, my first advice is: look for what is causing Hashi's. No matter your dose, you won't feel truly well until you do. FYI: the cause of my Hashi's was gluten. By and large, docs don't know anything about determining environmental causes of Hashi's.
TSH<0.01 is too low and your FT4 is too high. It seems like the doc you have is guessing. Consider that the "full replacement dose" of levo is about 1.7mcg/kg body weight. So multiply your weight in kg by 1.7 and see what that is. Going above the full replacement is unlikely to buy you anything. If you can get to a dose where TSH is close to 1.0, then it would be very helpful to know what FT3 is, so you can determine if your body is converting properly.
Hi there Eddie83, my dose should be around 100mcg and I’ve always worried about increases above this. I do feel like a conversion issue could be to blame. Maybe the change to Teva?
Hi Vizslaaddict, have your lifestyle changes included when you take your Levothyroxine with respect to timings between food or other medications or supplements?
I used to vary between 125 and 150mcg Levo daily for years as I took it with my breakfast but when I realised I should have been leaving a gap between taking it and breakfast of at least an hour, I eventually settled on 100mcg daily.
Hi thyreoidea yes used to take with a cup of tea which seemed to be fine. I cut out caffeine altogether and started taking with hot water and lemon only a few weeks before the latest blood test. I would be interested to know what influence this has had.
I think it is to allow the stomach to absorb the Levothyroxine without any food or caffeine to interfere with the process. It actually states on the patient information leaflet to
“swallow the tablets with plenty of water, you should usually take your tablets before breakfast or your first meal of the day”
Most people on this forum think 1 hour is sufficient. I took mine for years with my breakfast without any effects or hypo problems. I developed ectopic heartbeats so started to investigate and then realised it could be my Levothyroxine. The only change when leaving a gap was a lower TSH reading but no change in ectopics sadly.
This led to my dose being reduced as I must have been absorbing more. My TSH went from 1.0 to 0.02 range (0.3-4.2) after leaving a gap. My dose was reduced by 50mcg in total but in steps of 25mcg initially and the 2 x 12.5mcg.
I have always taken my dose on the day of the test as well.
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