Have been diagnosed for 25 years now. Feel as if I've never been well really, as put on a lot of weight, but have managed. Until last year. Suddenly started getting symptoms of hyperthyroid - palpitations, feeling sick, nervous, night sweats etc. Lots of testing done which showed cortisol was low as well as surpressed tsh. Was tested for Addison's but that was negative. Levo reduced from 125 to 100 but this sent tsh hypo and taking alternate 125/100 sends me hyper again!
Looking for some advice please, I have a referral now to an NHS endocrinologist and bloods booked, have requested full thyroid screen, b12, folate, vit d, also checking kidneys. Possible menopause to add to the mix too.
How do I stay well during the 5 month wait for the endo appt? Just feel terrible trying to manage this...
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Zi99y
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First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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)
What additional info could that add to help at this stage?
It would tell you if your hypo is due to an autoimmune disease, and therefore levels are likely to fluctuate between hypo and false 'hyper'.
Ultrasound of my thyroid showed very little thyroid tissue.
Then the odds are that you have Ord's Thyroiditis, which is Hashi's without the goitre.
palpitations, feeling sick, nervous, night sweats etc.
These could all be hypo symptoms, as well as hyper. Most symptoms are the same for both. Or, it could be the autoimmune disease causing your levels to rise temporarily, causing symptoms.
A suppressed TSH doesn't automatically mean hyper/over-medicated. In fact, once the TSH gets below 1, it's a very poor indicator of thyroid status. It could be low and your Frees low at the same time. Especially with autoimmune because the TSH takes longer to react than Free T levels. It's always trying to catch up.
Thank you that's really helpful, and does explain some of what I've been experiencing. How can I manage the fluctuations between hyper and hypo? How can I stop this and get stable again?
You can't. That's the short answer. The disease has to run its course until your thyroid is completely destroyed. Then, you will be able to get stable. But, whilst your immune system is still attacking the thyroid, mistaking it for the enemy, and the dying cells keep depositing their store of thyroid hormone into the blood, levels will keep fluctuating and there's nothing you can do about it, except adjust your levo accordingly. And that is something that is best done without involving a doctors because doctors are totally ignorant about autoimmune thyroiditis.
When my cortisol is low, whenever I try to raise thyroid replacement, in my case glandulars, I get hyper symptoms in the form of anxiety, perspiring, palpitations, even though I’m actually still hypo. I now increase Adrenavive dose (adrenal support) prior to increasing Metavive. Works a treat and is a little trick I’ve only just learnt
I was relieved to read your post as I have been experiencing the same. I had a PT 34 years ago and have been absolutely fine until last year. Same symptoms as you and same experience. I am alternating 88/75 from today. I was taking 88 then my (new) GP suggested 75 which after 6 months, has (coincidentally!) coincided with a HIGH cholesterol and a TSH of 2.5. My TSH has been 0.5 at the most for 34 years. I’m hoping you and I can reach an equilibrium again.
If your cholesterol is high, the odds are your FT3 is much too low. High cholesterol is a hypo symptom. And, I imagine it would be low on only 75 mcg levo.
I posted a reply above with my t4 and t3. I have arranged new bloods including all the above. I've not tested privately yet but have thought about it, I'm really looking forward to finally getting an appt with an endocrinologist and being able to sort something out!
BEFORE consultation we always strongly recommend getting FULL thyroid, including thyroid antibodies and vitamins tested
Otherwise you may be very disappointed with consultation
See what GP tests and what results show
tsh was 4.88
T3 was 5.6
T4 was 12.7
Please add ranges on Ft4 and Ft3 results
TSH shows you are not on high enough dose levothyroxine
How much levothyroxine are you currently taking
Which brand of levothyroxine and are you always on same brand at each prescription
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
I suspect there are quite a few women on here who managed fine/ok on T4 until they hit menopause and then things went downhill. That's been my experience too. Good luck with your endo appointment.
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Advice please, hypo symptoms but hyper results!
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