I've not posted on here for a very long time, but always read posts to gain knowledge from you lovely people.
At the moment I've been referred back to the endo as my numbers are all over the shop, I feel absolutely awful and am struggling to function. I have had to fight each appointment for the tests I think I should have, I have had to justify why I feel so ill, and I still feel I am being fobbed off.
The endo keeps trying to put me on Levo; I currently take 60mcg of T3 daily as Levo never helped me at all. I have asked the endo why I need Levo if I am taking T3 (Levo just gets converted to T3, and I'm sure I have conversion issues). I've had the "levels in range" response about most things: at my last tests in March 2022 they were not all in range.
TSH 12.46 (0.30 - 4.80)
FT4 less than 3.2 (7.70 - 20.60)
FT3 5.1 (March 2021)
Folate 2.76 (3.00 - 20.00)
Fasting glucose 7.5 (3.50 - 5.40)
I have asked for pituitary to be checked; he says it's normal based on MRI and bloods (I have empty sellar syndrome too). Today I have had to push to get my antibodies checked (Hashimotos) and he is doing a dexamethasone suppression test on me. He says if this comes back normal then he is discharging me to the GP. But nobody is looking at my physical symptoms, only the numbers!
These numbers scream to me that I am not well at all, but I am unsure what else to say to the endo to get him to take notice. Any suggestions??
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Penny_babe2001
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Thanks for replying. They've not retested FT3 since Mar 21. I hadn't realised until just now. Re the T4; yep, I told the endo that. He seemed surprised 🙄and yes, folate was low and have been on folic acid for a few months now. B12 was low, but in range at 200, Vit D is being retested but was 31, and ferratin was 21.6. I asked endo what I could take to help these, but he wasn't very forthcoming. I will get vit D and B12. I'm not very good at understanding about the antibodies. I know I have them, but would the level not go up and down depending on what was going on with my Hashi's and if it was attacking my thyroid? The higher the number, the worse it is, kinda thing?
Re the T4; yep, I told the endo that. He seemed surprised
It seems as though your endo hasn't got a clue. Is your T3 prescribed by this endo? If so he really ought to know all about what it does and how to interpret test results. It might be a good idea to find an endo has does have a clue!
folate was low and have been on folic acid for a few months now.
Folic acid is usually prescribed for a few months. You should be retested to see how things are going.
B12 was low, but in range at 200,
What is the unit of measurement - pg/ml or ng/L (these are both the same) or pmol/L and the reference range?
If pg/ml or ng/L this is very very low and many people with a level in the 300s have been found to need B12 injections.
Do you have any signs/symptoms of B12 deficiency - check here:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. You should not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
Vit D is being retested but was 31,
Is this nmol/L or ng/ml?
If it's 31nmol/L this is very close to Vit D deficiency.
The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.
You need an iron panel to include serum iron, total iron binding capacity, transferrin saturation percentage plus ferritin. This will show if you have iron deficiency. You also need a full blood count to see if you have anaemia. You can have iron deficiency with or without anaema. You can have low ferritin but good serum iron and saturation and in that case there would be no iron deficiency.
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Symptoms of low ferritin include:
◾Weakness
◾Fatigue
◾Difficulty concentrating
◾Poor work productivity
◾Cold hands and feet
◾Poor short-term memory
◾Difficulty remembering names
◾Dizziness
◾Pounding in the ears
◾Shortness of breath
◾Brittle nails
◾Headaches
◾Restless legs
Symptoms of iron deficiency include:
◾Persistent fatigue
◾Pale skin
◾Shortness of breath
◾Headaches
◾Dizziness
◾Heart palpitations
◾Dry skin
◾Brittle hair and hair loss
◾Swelling or soreness of the tongue or mouth
◾Restless legs
◾Brittle or ridged nails
I asked endo what I could take to help these, but he wasn't very forthcoming.
So your endo is totally clueless, I personally would be running away very fast. He is keeping you ill.
I will get vit D and B12.
No, don't get anything yourself at this stage. Hopefully your GP will prescribe some Vit D, it wont be enough but come back and tell us what is prescribed and then I can give you further information on the amount you should take and what important cofactors are needed when taking D3.
Don't do anything about B12 until you have checked the links about signs/symptoms and if you have any you need further testing. It's important that you don't take folic acid/folate at this stage as it can make things worse if you have B12 deficiency. Treatment of the B12 deficiency first, folic acid follows.
Plus you need to sort out the iron tests and GP may need to prescribe there.
I'm not very good at understanding about the antibodies. I know I have them, but would the level not go up and down depending on what was going on with my Hashi's and if it was attacking my thyroid? The higher the number, the worse it is, kinda thing?
The antibodies don't attack the thyroid. Hashi's is where the immune system attacks and gradually destroys the thyroid.
After the attack the dying cells release thyroid hormone which causes FT4 and FT3 to rise well over range and the TSH becomes very low/suppressed (false hypER). Eventually the excess hormone is excreted and you become hypO again.
There's no cure for Hashi's, it's the resulting hypothyroidism that's cured.
The number of antibodies doesn't matter, it just means that you have Hashi's and they will fluctuate. As the disease progresses the number may reduce as there will eventually be no thyroid left, it will have been destroyed.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Thank you so much for this info. I am going to speak to the GP tomorrow and ask for an appointment to discuss things. I think maybe I might be better off if the endo discharges me back to the GP. T3 was prescribed by a previous endo, not this one. This one seems very T4 obsessed. I have been gluten reduced, but not totally gluten free for a while now. It has def helped with bloating and tummy troubles.
TSH has been supressed for a very long time. Every single test. Then it has just gone up and up and hasn't come back down much:Aug 2019 - 4.37
Nov 2020 - 4.49
March 2021 - 15.99
June 2021 - 10.97
December 2021 - 14.76
March 2022 - 12.46
I've been on the same dose of T3 for about 6 years, I think.
4.20 -6.90 is the FT3 range. It was only when typing this post and checking my results that I've realised they have not retested my T3 since March 2021 - clever, considering I am on T3 only 🙄I will have to speak to the GP and ask them to retest.
Yes, not much point in testing at all if they don't do the FT3 when you're on T3 only.
Are your blood tests always done in the same lab? I think retesting in a different lab would be a good idea, to see if there's any interferrence with the testing - it does happen with TSH. Either that, or there's a pituitary problem. On that dose of T3, your TSH should be suppressed, the pituitary shouldn't still be making any.
Endo swears blind that my pituitary is fine. I think the tests for this are listed on a letter. He did Serum IGF1, FSH, LH, Prolactin, Sensoestradial and growth hormone. I don't think they would send tests to another lab; we are in a very small area and it all goes to one place. I would have to really fight for that.
So, how does he account for that rediculously high TSH on 60 mcg T3? He doesn't even test the FT3 so I don't think he really understands anything much about it.
What were the results for all those pituitary tests? Did he not do ATCH? Has he every tested cortisol?
To be honest I have no faith in the endo at all. He just keeps trying to get me to try adding Levo to my T3. I even questioned why I would add something that I don't need as I take the active hormone, and he couldn't really explain it.
I can't see any result for ATCH. The other tests didn't have ranges ( I have done a bit of googling to find rough ranges though). Growth hormone - 0.1 ug/L
serum IGF 1 - 14.8mmol/L
FSH 39.9 IU/L
LH 24.7 IU/L
Prolactin 305 mIU/L
Sensoestradial less than 55 pmol/L
He's today given me a test sheet for a dexamethasone suppression test; that's for cortisol, isn't it? On those tests was a random cortisol result of 324 nmol/L, but that doesn't help with anything, from what I have read.
It's really scary that these are the people that are supposed to be helping us get well.
A dexamethasone suppression test is something to do with cortisol, but I'm not sure what.
Ranges vary from lab to lab, so you can't really google them. You have to have the ranges that come with your results. But, for some unknown reason, endos rarely give ranges. I don't think they really what patients to know what their levels are!
Which is kind of strange because a level of 324 nmol/L isn't really excessive at all. If anything it's borderline for suspicion of Addison's Disease (too LOW cortisol) if it's a morning test. ouh.nhs.uk/biochemistry/tes...
Random cortisol testing is now considered too unreliable as a test for Cushing's, a 24 hour urine might be preferred. gloshospitals.nhs.uk/our-se...
Do you have symptoms of Cushing's like moon face, buffalo hump, red/purple stretch marks?
Have you had cortisol measured, fasting, as early as possible in the morning, along with ACTH? The ACTH tube has to be iced & immediately so it's usually done at a hospital or at a lab. Fasting potassium & sodium?
In case of Addison's suspicion, you'd want an 'ACTH stimulation test" also called a "Synacthen stimulation test". mountsinai.org/health-libra...
FSH & LH also seem abnormally high but would need references ranges to be sure, am just going off the top of my head. Worth pursuing to be sure.
I'm not medically trained but the endo's whole story seems a bit strange. I would definitely recheck with your doc if they really suspect Cushing's. Can you get a second opinion elsewhere or ask them to at least test cortisol properly using the current standards?
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