Hi all, been to GP as signed off work- traumatic 6 week break with husband having life threatening mediastinitis infection after 'day' op for pharyngeal pouch stapling. He seems fine now but after 5 weeks extreme adrenalin, I'm left physically and emotional exhausted & cry at the drop of a hat.
Basal temp somehow risen to 36.5 from usual 35.3, I halved t3 from 150 mgc daily to 75 for 3 weeks before blood tests and then none for 48hrs. Taking 4x NAX, 3x vitC, b12 1000 sublingual, q10, d3 2000 sublingual, selenium, 20mg iron, and methyl folate 1000mg as well as t3- most on Dr P recommendation. Photo shows latest blood results from Thursday. Any help very welcome please as this seems to be only place anyone makes sense. 😄 thank you
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Monika53
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Hi Epic Swan- thanks for your reply . I was taking basal temp and it had risen from under to normal and I started experiencing palpitations. Started off by being so occupied up and down to hospital that I forgot! I later read something dr Lowe had written which I interpreted as - if hydrocortisone was not available when adrenaline high due to stress, then reduce t3. I probably misread something but it made sense! As my Gp not well informed herself, I have never had a proper cortisol test - one time only said normal level for morning!
I'm impressed with my own copy and paste learnings👍Found quote from Dr Lowe below:
"However, it's important to consider whether a patient's Cytomel dose is high enough to sensitize her to other stimulating chemicals. (Examples are caffeine in coffee, theobromine and theophylline in chocolate, and ephedrine in cold medicines.) If the Cytomel has excessively sensitized her to such chemicals, then when she consumes them in foods or medicines, she'll experiences transient symptoms of overstimulation. She'll be overstimulated for a few hours, but then the symptoms will disappear. The Cytomel will have also excessively sensitized her to her own adrenaline and noradrenaline. Because of this, emotional arousal or intense exercise might also cause temporary symptoms of overstimulation."
"The proper solution to occasional symptoms of overstimulation is to find the causes and correct them. The patient's may have to reduce her Cytomel dosage low enough to relieve excess sensitivity to stimulating chemicals. And she may have to reduce her intake of such chemicals. In general, though, the proper approach is not to take the patient completely off Cytomel—not when it has relieved her troubling and disabling symptoms."
Not sure where I read the adrenaline / hydrocortisone connection😁
Hi Monika53, haven't had internet access for a few days so couldn't reply. Having read all the good replies here it's good to see you've upped your dosage back up to 150mcg. You may need higher by the look of some of your previous posts where you still had hypo symptoms on 150mcg T3. I read somewhere someone had to have their FT3 at around 8.5 (above ref. range) just to feel well as the T3 wasn't getting into the cells properly - so they had high serum FT3 levels with no signs of over-medication in order to feel well. Everyone is different.
I am back on 150 T3 now but feeling completely drained - no energy and still emotional at the drop of a hat!! Not sure how long to leave it before increasing further as still feel prob adrenals/ cortisol impacted by weeks of high stress but not sure how to get that across to Gp. Do you know of another test I can try to request from Gp. Some have been refused in past 😁
Thanks for your support - how can we all join together to change this resistance by the NHS to understand us😓 x
Not sure what tests the NHS actually do to be honest. Mine (GP) only seems to want to know about TSH. I tend to get the nurse doing the blood draw to add some other tests non-thyroid (always works and dr looks at results and seems to wonder why she asked for all of the tests but never says anything ;)). The lab never tests FT3 and only does FT4 test if TSH high, which I think is standard lab practice.
I've had serum cortisol measured privately and mine was high (morning test so only a snapshot in time).
I think it's 3yrs since I saw dr P first and dropped T4- Saw him again in May this year and he increased NAX . I was reasonably ok except put back on the 14k I had lost, until the stress of the summer holidays. I have emailed surgery today asking if a referral was made in May to endo ( know it wasn't as that Gp was so condescending insisted everyone had to have T4) and if not for that to happen as I'm convinced adrenals were impacted with 6 weeks intense stress. Think I'll have to have private tests done.
Wish I could say I'm feeling better but now temperature and diarrhoea with high pulse so I have dropped back to 75mg t3 today as I was scared of thyroid storm even though I know it's a bug😳
Had a telephone counselling session yesterday, blubbed all the way through- so unlike me and I really can't understand why my reaction so extreme
Hi Monika53 - At least you've been on T3 only for a long time. Have you ever felt well on T3 only? I seem to remember you felt great on 225mcg. Forgive me if it's listed above but I am so tired with the common cold. I know it's difficult and I do hope you feel some relief soon. The changes you're making are fairly hefty so it may be just a case of getting used to it again. Maybe try upping your dose gradually from 75mcg. Your FT3 on the last test (above) is extremely low so you obviously need to increase, but I'm no medic. The high temp, diarrhoea and high pulse are possibly due to increasing back up too quickly?
Was your counselling session to do with work? Your reaction is normal given your thyroid hormone levels are all over the place!!
Thanks for all your support- I think I was much better on 225 but that was a different source - Mexico- so my current t3 I suppose could be better as it's from France. I was always concerned about quality control from Mexico so feel more reassured that European standards should be better??
Interesting that your nurse adds some blood tests - I asked if cortisol was being retested and she was adamant she couldn't add it!!
I thought I'd have some counselling sessions to help me work out the emotional component rather than the physical and she did help me come to the decision I needed more time off work and supported the need for an endo referral. I will continue although she's away next week. I have limited sessions free through work. I'm like it with my friends and my daughters too! I have never felt so out of control with my emotions- they are so used to seeing me as the strong one they must wonder if I've lost the plot!
What I really need is a lottery win, a long holiday in the sun and to retire😂 can but dream😂
Hi Monika - to be honest I tend not to ask whether x or y is being tested I say the doc suggested it!! Sometimes to be fair I cannot remember what she wanted testing!!
With your tablets from different sources/manufacturers it may be purely down to how you absorb them as an individual.
I know what you mean with European standards - I would think the same but I could be being overly harsh on the Mexicans
It's hard when you know you're different around people. Like you, I'm strong but once those hormones drop/rise rapidly I'm off the map and totally different. I used to want to be on my own and not around anyone to see me in that state. If you felt well before just hang on to that as you can get back there, it's just going to take a bit of time.
Hope your cold is better today - I'm much better today temp and pulse lower.still jippy tum though.Positive is 1k down in weight😀 not heard back from Gp yet but planning to have another 2weeks off work so hope she agrees to certificate!
Looking up private tests for adrenals and any good endos in the south east. Think I'll have to splash out - lottery win or not!
I don't know if I'm misunderstanding your blood test results, but I think you may have the lowest FT3 and FT4 results in the presence of a very low TSH that I've ever seen! How are you still breathing? You were on nothing like enough T3 at the time of testing. Halving your dose seems a very drastic step - but you were going through such a lot of trauma at the time that I expect it was really hard to think straight. Rather than less, I'd hazard a guess that you actually needed more. What are you taking now - and how do you feel?
Your MCV is titchy - I would imagine you're very anaemic - have you had ferritin tested recently? And you may well be B12 deficient as well.
Thanks for your reply 😂 I'm still here but not surprised can't face my job!
Serum ferritin 30 ug ( 30 -400 uh/L)
Serum B12 597 (191- 663 ng/L)
Serum folate 8.6 ( 4.6 - 18.7 ug/L
I have been taking supplements iron, b12 sublingual and methyl folate as above for 3/4 months! What's going on ? Usual dose of t3 is 150 which I'm working back up to but no t4 as not converting and was very toxic according to Dr P last time I saw him was May,when he put my nax upto x4.
In 2013 was losing weight slowly on 225 mg T3 but then supply in Mexico dried up and dropped to 150mg as scared of running out. And weight quickly came back. Even 150mg seems very high a dose though in comparison to what i'm reading on here so was worried about 225!
Not had any help from Gp here and once saw endo ( before dr p) and told me about diet, gastric band or bypass options. Nurse once suggested I must be lying about what I was eating - crying as I write this now- feeling a complete nutter - and I'm a therapist! God help us all 😁 really just want to feel better. Thanks for your help
The doctor has no idea what he's talking about. It's clear to me you weren't on enough T3 - don't worry about what the rest of us take - for whatever reason, possibly absorption issues, it's taking more than you might ordinarily expect to raise your levels back up.
So I was right about the anaemia - which again points to absorption issues. Something about your digestion is not really right. What are you eating? Do you eat gluten free? How's your gut?
And have you got a good reliable source of T3 now?
Thank you again - I try and eat as organic as possible - nutribullets with veg and fruit and home made soups weekly. Tried gluten free but no impact. Normal meat and fish, recently liver again. Constipation on less T3 - more normal on higher dose. Some reflux problems at time but prob due to big tummy. Overall good diet , a couple of days low carbs as dr p suggested,
Reliable source now of T3 from France but dr there thought 25mg was normal daily dose - but went to 150 when I asked.
Thank you - this forum is a lifesaver. So much of my emotional response is down to frustration with other 'professionals' - do they care??
The short answer to that last question is probably "no". Maybe it's compassion fatigue. Too many sick people, so little time...
You said gluten free had no impact - when you say that, do you mean that your absorption of medication wasn't improved? Did your blood tests before and after look no different? I think my point is just that you might not have felt magically better - but there really is something unusual about your body's ability to utilise nutrients and meds, and maybe it did help without you realising it.
However, it could also just be that you have a huge degree of thyroid hormone resistance.
Glad you've found a new supply - but it still looks like you might need more than 150mcg. How long have you been back on that dose?
Medical personnel are sometimes so critical it is assumed everyone is over-eating when they have an actual illness.
Just to say Dr Lowe took 150mcg of T3 daily (once daily in the middle of the night). Nothing then interfered with the uptake. I myself take around 32mcg of T3 and am well so I hope you feel better quite soon after your and your husband's very stressful time.
Thank you shaws. I'll get back to 150 and see how I go for a while . I have started to take first dose at 5 am as Dr Lowe recommended to make best use of cortisol high? I might double up then and see especially whilst I'm still off work.
Prat. Even having left 48hrs I would expect your FT3 to have been higher than that (why 48hrs? 24 would've been fine). 75mcg was not enough - which now you've said you were on 225mcg at one time does make sense.
Hi Jazzw- that made me laugh! 48 hrs cos I was scared she'd say I was on too much t3 - but from online results she's suggested that anyway so I can't win. Sounds like I'll need to try to get back nearer 225 slowly. I'm due to retire in a couple of years and was trying to get Gp onside to prescribe as I'm scared I won't be able to continue funding T3 and all the supplements I'm on😁
Thanks for your support- I can't work out why I'm such a gibbering mess - I'm sure cortisol levels have something to do with my emotions but weren't retested- even if they were they wouldn't be 24hr so a bit useless. I'll save up for private test if I continue to feel like this.
Thank you for your reply - last d3 test was 84 nmol in August 13 - no range given. Others were recent and in post above. I take d3 2000iu daily sublingual . Restoring dose of T3 slowly but not sure now how high I can go?
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