Hi all, long story short. My dose of levo was increased in February as I was very undermedicated with a TSH of 55 and virtually no T3 or T4. 8 weeks later things were back on course with a TSH of 0 39, slightly overmedicated against the lab baseline of 0.55. Shortly afterwards I started to feel quite stressed, had diarrhoea, was losing weight and obsessing about my health. This carried on for about 3 months and I had at this point convinced myself it was the menopause. Thyroid was checked again end June and TSH was at 0.14. I decided to reduce dose from 112mcg to 100mcg and to start HRT. Two weeks in to HRT I was struggling with bloating and stress getting worse so I stopped. Then the world came crashing down, I was convinced I was dying, taken to emergency twice but nothing wrong other than my TSH was rising quickly 4.3, 16, 30 in 5 days. Free T3 non existent at 1.8 against base of 2.5. T4 ok at around 12 against reference of 9.5 - 22.
I have been put on short term tranquilizers to calm the anxiety and help conversion and also increased the levothyroxine and testing again in 3 weeks.
Nothing much to say really other than I had no idea before today how crippling the anxiety can be but feels like your losing your mind and also in hindsight I should have spotted the overdosing. I have essentially gone from overdose to zero in 3 weeks.
I so hope this settles soon.
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Georgiek111
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Sorry to hear things haven’t gone well. Do you have more blood test results from before the reduction to include T3 and T4? You can’t tell if you are over medicated by TSH alone. TSH is the worst one to make a judgement by; don’t be fooled by GPs citing it as accurate… majority of individuals need TSH to be suppressed to feel well. There is also an overlap in the symptoms of being over and under medicated. Your T4 at 12 isn’t even 50% through range…
FT4 & FT3 levels need considering alongside these high results because TSH can not be relied upon as a good indicator of thyroid hormone levels. TSH is also more likely to be altered by assay interference than T4 & T3.
Your results are difficult to assess because you haven't listed them but "Free T3 non existent at 1.8 against base of 2.5. T4 ok at around 12 against reference of 9.5 - 22" is wholly inadequate, and would be naturally encouraging a raise in TSH, and causing you to feel very symptomatic. As Fortniteplayer has cited there can be overlap between hyper & hypo symptoms and when we are feeling so unwell it can be hard to gauge exactly how we feel except crap!
Tranquilizers should help with your anxiety but not with thyroid hormone conversion. For that you need optimal iron & nutrients. Have you addressed the previous dire Vit D levels, also VitB12 & folate? Have you had iron checked? These will all indirectly have a bearing on how thyroid hormone meds are performing. Did you have sex hormones tested before starting HRT? Which HRT did you take?
All these quick hormonal changes will have had a profound effect on your adrenal glands which because thyroid hormones are so low is most likely the cause of your anxiety (think of high cortisol & adrenaline rushes). It is important to only adjust hormone doses in small increments and always one hormone at a time, leaving six weeks until the next change.
You said before that you experienced no unusual new symptoms with a previously high TSH. Once thyroid hormones are reaching balanced optimal levels & you start feeling a bit more in control you should be able to gauge if these high TSH levels are inducing any new symptoms as elevated levels can be the result of pituitary issues.
I hope you start feeling better soon. If you post next lot of labs in a list complete with ranges (numbers in brackets) it will make it easier for members to offer more informed comments.
Sorry for the scant information earlier, here is the whole sorry story with as many numbers as I have but there are gaps.
January this year I had my usual blood test, this was 18 months overdue due to Covid. I had felt ok but had experienced some mild level anxiety in the evening for a couple of weeks before the test. This is something I have had in the past and usually indicates that I am slightly overmedicated. Over the 18 proceeding months I had gradually reduced my levo from 100mcg per day (700mcg per week) to somewhere between 500 - 600 as I believed I was over medicated. In hindsight there were plenty of other clues that this wasn't actually the case, I had been desperately trying to lose weight for 6 months and had started to experience muscle twitches around my mouth and face.
Result in January of TSH was 48 (reference 0.55 - 4.36)
GP called and said I needed to retest to check and also increase dose
Retest three days later TSH 51, T3 2.1 pg/ml (2.3-4.4) T4 0.9 pmol/l (12-22)
It was clear I had been undermedicating myself for sometime, however this is when the first mistake happened in my opinion. Despite my having told the GP that I wasn't taking the 100mcg per day I think this got lost somewhere along the way and my dose was increased to 112mcg per day. Rather than this being an increase of 12mcg per day (84mcg per week) it was actually nearer 40mcg per day (284mcg) per week.
I started to feel much better, no anxiety, weight started to come off, no muscle twitches.
Restested TSH 8 weeks later in March which was 0.36 (reference 0.55 - 4.36).
No other tests ordered as I felt good, the increase had clearly worked although the TSH did indicate that the increase may be slightly too much.
Second mistake I missed the signs or ignored them. I was still losing weight despite eating more and I had constant diarrhoea. I started to suffer from trembling but as we were in the middle of a family crisis I put this down to stress (it may well have been). Shortly after I developed a urine infection was treated for it but it didn't go away, I was tested for yeast and urine cultures etc everything was fine. I became fixated and convinced that this was due to the menopause. My behaviour became obsessive, I was searching online for solutions, vaginal creams etc. I was baffled as it would come and go, was always worse in the morning and calmer in the afternoon. I had decided I needed HRT and consulted a specialist online who prescribed Estrogen 0.5g gel and Utrogestan 100mcg daily vaginally.
Two weeks before starting I had my normal TSH blood test, this was now 5 months after the dose increase and my TSH was 0,14 (reference 0.55 - 4.36). I felt that this was definitely too low and that coupled with the weight loss and diarrhoea meant I needed to reduce my dose. I dropped from 112mcg to 100mcg. Somewhat ironically now the problem with frequent urination seemed to calm down but I was already convinced I needed to try HRT so two weeks after reducing my levothyroxine I started the HRT.
For the first week everything was great, I felt fine, no problems with frequent urination and I felt I had found the solution. I am assuming; alot of assumption here, that as my thyroxine level fell I actually felt better for a while after having been taking too much. In the second week I started to feel incredibly emotional, depressed, I started to pee all the time, was bloated and generally felt awful so after two weeks I stopped.
Two days after stopping I started waking in the morning with uncontrollable trembling and diarhoea, this would continue through the morning but would calm down in the afternoon and usually start again late evening. I would wake through the night trembling. I became convinced that there must be something wrong with me and I went to A&E, they ran every blood test but the only thing that showed up was my TSH was at 4,68. They told me I needed to increase my levothyroxine but I wasn't convinced so I did nothing. The shivering got worse and I then became convinced I had diabetes and three days later ended up calling an ambulance in the middle of the night. Again they ran every test and nothing other than my TSH was now at 16. I went to see my GP as at this point I had recognised that what was actually happening was acute anxiety. She discussed the situation with an endocrinologist who advised that the anxiety needed to be brought under control and TSH T3 and T4 checked. Her view being that the situation would stabilise having stopped the HRT but controlling the anxiety was key. All of this happened in the space of a week.
Tests showed
TSH now at 30.6
T3 1.8 pg/ml (2.3-4.4) / 2.83 pmol/l (3.3 - 6.80)
T4 16.6 pmol/l (12-22) / 12.9 ng/l (9.3-17)
I am taking a quick acting sedative at the moment to control the anxiety and my levothyroxine dose has been increased back to 112mcg. I have been on the sedatives for 7 days and the dose increase for 9 days. I have observed that the anxiety is changing. Before it was obsessive thoughts around my bladder and health, convincing myself that I was ill. Over the first 4 days with the sedatives those thoughts quietened, never completely went away but I could cope. What started to happen yesterday was that my mind is much quieter and I feel ok and then out of nowhere usually late evening and in the morning I get a massive wave of anxiety not connected to anything that just feels like a panic attack. I am hoping that this may be a sign that my thyroid is beginning to respond to treatment and that my symptoms are evolving as I now have some other more classic symptoms of fatigue, cold hands etc. The reality is there is no quick fix and each step we take has to be given time but sometimes it is so frightening and I worry I have done permanent damage to my thyroid.
Logically it appears I went from having an overmedicated thyroid that was causing anxiety but went unnoticed to then having an underactive thyroid due to the HRT. I guess this will take time to heal and settle and I don't want to go running down any other rabbit holes at the moment as I feel my body just needs some stability. Until january this year I have never had issues and the extreme changes of dose must play a part in where I find myself.
I take vit D supplements every 2 months which my GP prescribes and have been watching my diet the last two weeks, plenty of fish, eggs, protein etc.
It’s not usual to have these sudden exaggerated TSH elevations, not even when we are under medicated.
I have read articles about heavy urinary loss of TBG resulting in TSH not responding normally to exogenous hormones, and periodically becoming higher & higher. When you had your bladder issues where you suffering from proteinuria? (high levels of protein in your urine) .
From your symptoms and blood results I truly believe you’ll need T3 Liothyronine medication along with Levothyroxine T4 medication. A very similar thing happened to me. My TSH elevated on Levothyroxine only. My GP increased my Levothyroxine dose. About 6 weeks later my TSH was under range showing I was over medicated with Levothyroxine. I crashed at home one day and was taken to hospital. T4 too high, TSH too low and T3 barely detectable. What was needed was T3 medication. I was discharged from hospital without any action. This went in for months. Back snd forth to hospital by which time I could barely walk or sit up. I was in a mess. I found this site snd was advised to go private. I did. Within 2 private consultations I was diagnosed with being a very poor converter of Levothyroxine T4 to active T3. I was put on a private trial of T3 along with my normal dose of Levothyroxine. Oh boy I can’t explain enough what a positive response I’ve had. I then did the DIO2 gene test through Regenerus Laboratories. This came back positive. I have this faulty gene. All along I should have been on T3 plus T4 medications. The NHS won’t entertain anything connected with T3 as there has been a massive price hike by the pharmaceutical industry who supplies to our NHS. Anywhere else in the world it’s not an issue.
I’d suggest you try the private route. If you wish I’ll pass on my private only Endocrinologist details who is pro T3 and fully understands the need for it. Only about 1.5% of people needing thyroid treatment fall into this group needing T3 medication. Most GP’s know very little about thyroid treatment. They just look at ranges from blood results. And the NHS ranges are set too wide deliberately. You need to aim your TSH to be around 1.00. This is a healthy persons level normally.
Do you have Patient Access. You can check your blood results amongst other things quickly. I checked mine and in 12 years my TSH was never under 4.00. It must always be under 2.5 otherwise you’re in hypothyroidism mode. You need to request all bloods T4, TSH snd T3 to see how you’re converting. If your GP won’t do that then go down the private route of blood tests. And or get the DIO2 gene test through Regenerus Laboratories done to confirm.
I know this may take a few weeks to sort but it’ll be worth it all once you start to feel better with proper diagnosis and treatment.
Let me know if you want my private endocrinologists details.
And I hope your feeling ok’ish today.
Oh snd vitamins are essential to check also. B12, Ferritin, Vit D snd folate. Get your cholesterol checked also snd your cortisol.
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