Can anyone advise me on Cushings people who have had this?
Brief overview diagnosed hypo 3 years ago very high tsh very low t4 initially which has taken 3 years to get right T4 around 21.. (12-24)TSH is always under range and t3 remains mid range...on 175 Levo I have autoimmune thyroiditis the endo I see says it’s not hashimotos as I don’t have an enlarged thyroid I had it scanned last year
1000 mg metfotmin for PCOS and 80mg propranolol for racing heart
But I’m still not right and I am convinced I have some other endocrine condition going on..
I’ve massively gained weight in my top half and around my back so much that I’ve had to buy new bras as I cannot get my old ones done up the rolls of fat on my back are awful I’m so ashamed this has been since Christmas but I was already overweight before then but arms and legs remain thin
I have a buffalo hump which I’ve had for about 3 years I saw a physio who commented on it then and I still have this now
Headaches
Blurred vision
Pins and needles in hands
No energy
I struggle to walk up stairs some days I feel like my legs will give way weakness in muscles
Hair under chin
Dry hair and male baldness patterns
Lack of periods 6-8 week cycles I have had high testosterone levels confirmed before but they put this down to pcos
Bloating reflux and heart burn and a mixture of diarrhoea and constipation
Poor wound healing tiny scratches leave scars on my hands
I’ve also notice more stretch marks on my tummy
Adrenalin rushes but not in a good way heart racing jittery nervousness tight chest feel like I can’t get my breath
Just not feeling right
I know I have a lot of symptoms of Cushings but I also know it’s very uncommon and hard to diagnose
Does this sound like Cushings and what should be my next steps and is there anything else this could be?
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Fox78
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I'm afraid I don't know anything about Cushing's, except that it's high cortisol, but I would suggest that your next step should be to get a 24 hour saliva cortisol test. But, you'd probably have to do it privately.
What I would say about all your other symptoms is that your FT3 is too low, and that's what causes symptoms. Your conversion of T4 to T3 is poor, and that could very well be down to your Propranolol, which is known to adversely affect conversion. Ask your doctor if he can prescribe some other sort of beta blocker that doesn't affect conversion. Although, if your FT3 were higher, you might not have a racing heart and wouldn't need a beta blocker.
Have you had your nutrients tested? Vit D, vit B12, folate and ferritin? If you're low on ferritin, that could affect your heart and cause it to race.
I didn’t know that about propranolol so that’s interesting it’s certainly helped my heart racing as I was getting this really bad last year albeit I was on a lower thyroxine dose then
I have tried t3 but I felt dreadful!! So tired and just not right so I stopped taking it albeit I was only on it for a few weeks I dropped my t4 down by about 40 and took 20 t3
I was my next discussion with my endo to see if he would prescribe it as I do agree my t3 is low and always has been in comparison to my t4
I’ve not had my other vits checked recently but I am due to speak to my endo in two weeks so I will ask him them to do a full panel as he’s very good
I have tried t3 but I felt dreadful!! So tired and just not right so I stopped taking it albeit I was only on it for a few weeks I dropped my t4 down by about 40 and took 20 t3
That's probably why you felt terrible. You dropped your T4 by too much, and started on too high a dose of T3. You probably would have been much better if you'd reduced T4 by 25 mcg and started on 5 mcg T3. Then, increased T3 by 5 mcg every two weeks until you felt well.
Did you start taking vit D without testing first? That's not a wise thing to do. And, if you're taking vit D, you should also be taking vit K2-MK7. Taking vit D increases your absorption of calcium from food, and K2-MK7 makes sure the extra calcium goes into the bones and teeth, and doesn't build up in the soft tissues. I'm not sure, but I think that might be affecting your heart, too.
Propranolol can badly affect conversion and uptake of levothyroxine. Propranolol has to be weened off incredibly slowly. I was stuck on propranolol almost 20 years...more on my profile
Propranolol also may lower magnesium
Hashimoto’s frequently causes Gluten intolerance
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten intolerance. Second most common is lactose intolerance
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
I have Adrenal Insufficiency so the opposite to Cushings but if I were in your position, write down all of your symptoms and ask your GP to do a random Cortisol blood test initially (although I would have it done first thing in the morning) . If this is elevated then go from there.
I will look to see if I can get a saliva test done when I next speak to the endo on the nhs
I will also speak to him about changing propranolol I don’t really want to come off beta blockers though as I experienced terrible heart racing prior to going on it which has got better
I’ve had numerous blood tests for coeliac which have always been negative and my vitamin levels are always mid range and whilst I completely agree vitamins need to be optimal I’m not sure in this case sufficient or deficient levels would cause massive weight gain a buffalo hump hair growth high testosterone levels lack of periods etc so I definitely think it’s more hormonal just need to figure out what!
Thank you all and stay safe x
Okay, I have had Cushing's from a pituitary tumour & run Cushing's UK on Facebook. PCOS is often diagnosed when it could actually be Cushing's, however you can have PCOS with Cushing's. Was the PCOS confirmed by scans, did they see cysts on your ovaries? Many of the symptoms you are experiencing can be linked to Cushing's. You can do the 24 hour saliva test but it won't be recognised by your Endo, & to be honest rather than doing one throughout the day it's sometime best to do them at night for 4 consecutive days, as with Cushing's cortisol is high at night & may not be during the day. When you can ask your GP to do an early morning blood cortisol & a 24 hour urine collection, these are the best started tests. If these are high then you need to be referred to an Endo who is conversant with pituitary/adrenal issues. Cushing's can be caused by either a benign tumour in the pituitary gland or adrenal glands. It can also be caused by long term steroid use. Depression & alcoholism can also raise cortisol. The contraceptive pill & HRT can also raise cortisol. Are you sleeping? Insomnia is a common symptom. Let me know if I can help further, I can recommend an Endo near you as I hold the list from the Pituitary foundation.
Have you been diagnosed with Type 2 Diabetes or pre-diabetes or insulin resistance? I'm just wondering if metformin is being prescribed for diabetes or PCOS or some other problem?
The reason it is relevant is that high blood sugar will cause fast heart rate. I don't know if you are aware of this but some people have managed to put PCOS into remission with a low carb or ketogenic diet (which reduce blood sugar).
Poor wound healing tiny scratches leave scars on my hands
High blood sugar increases wound healing time.
Adrenalin rushes but not in a good way heart racing jittery nervousness tight chest feel like I can’t get my breath
I get all these symptoms when I eat a lot of carbs or eat too much sugar. I haven't been diagnosed as diabetic.
Note, if you were to reduce your intake of carbs your blood sugar would drop to more healthy levels. This will mean that any meds you take that affect insulin or blood sugar will have to be re-calibrated by you and/or your doctor or diabetes nurse to avoid hypoglycaemia or hyperglycaemia. Lots of people who start eating a low carb or ketogenic diet are able to get off their diabetes-related meds altogether.
Hi thanks that’s useful and I will take a look at the links
No I don’t have diabetes metformin is used as an unlicensed drug to treat pcos which is what I take it for my blood sugar levels are well within normal range it’s said to help reduce some of the androgens that are present with pcos but to be fair I don’t feel it makes any difference to me
I’ve had heart palpitations for over 3 years now before I was put on thyroxine which once diagnosed with a severely under active thyroid my tsh was 46 and my t4 was only 4... that’s what they put this down too I’ve also had numerous clear Ecgs
However I will absolutely take a look at the carbs effect on the body
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