I am going round in circles coz I can't get the help I need from my GP. They won't recognise that I have adrenal problems and I'm falling apart and all they offer is antidepressants which I have said no to. More or less saying if I don't take the help offered they can't help me.
I have been doing so much reading I'm confused as they say no thyroid medication before fixing the adrenals first but they don't recognise adrenal problems unless you have Addison's.
By what I have read my thyroid problems are caused by adrenal insufficiency. I am considering a new cortisol test, last year's was low morning cortisol and low normal dhea. Private doc looked at it and said my cortisol would have been even lower if I hadn't been using natural progesterone.
So here lies my problem. GP tells me to stop progesterone and levothyroxine but won't do anything about low adrenals. How do I fix it myself? There must be a few on here in the same position?
Thank you for any guidance on this. Xx
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magsyh
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He just told me to up my levothyroxine! I am not really coping at all so I reduced it to keep my GP happy I'm down to 37mcg but I'm falling apart. So emotional and dizzy.
I can call him but he charges £79 for 15 mins! And then his solution is more expensive tests and then another arm and leg to tell you what he thinks. Has cost me a fortune and I'm getting nowhere.
Well, maybe your first step is to get an up to date adrenal test with either Regenerus or Genova Diagnostics. Then you could put the results on here, along with your current thyroid results, to see if anyone has any ideas.
The majority of mainstream doctors do not believe in Adrenal Fatigue. Either you have Addison's or there's nothing wrong with your adrenals, as far as they're concerned - no shades of grey!
I was lucky enough to see a hormone specialist that had Adrenal Fatigue himself, so did understand it. My morning cortisol was very, very low, but I didn't have Addison's. He prescribed HydroCortisone, but that's really a last resort. Not something to take lightly. Not having seen your cortisol levels, I really cannot say if it's something you should suggest to your doctor or not. But, if you can help them some other way, then that would be best.
Adrenals need good levels of nutrients - something most hypos don't have. They need lots of B vits, lots and lots of vit C, and plenty of salt. No low-salt diets! They need plenty of rest and good protein - best to eat a high protein breakfast as soon as you rise. That means it would be best to take your levo at night. And try to always go to bed and get up at the same time every day. Adrenals need routine.
I have been doing so much reading I'm confused as they say no thyroid medication before fixing the adrenals first
There are two schools of thought on this - even amongst doctors that recognise Adrenal Fatigue. Some say fix the adrenals before taking thyroid hormone replacement. Others say that you need to start the THR first, raise your T3, and the adrenals will then fix themselves. It possibly depends on how far gone your adrenals are.
So, what are your thyroid levels? When did you last have them tested? Do you know what your FT3 is?
I am considering a new cortisol test, last year's was low morning cortisol and low normal dhea.
Sounds as if your adrenals aren't too far gone then. And could recover with a bit of TLC, as outlined above.
So here lies my problem. GP tells me to stop progesterone and levothyroxine but won't do anything about low adrenals.
Why does he want you to stop the levo? That doesn't make sense if you're hypo. Who diagnosed you? Do you have Hashi's?
Who prescribed the progesterone, and why?
I very much doubt your GP is capable of doing anything about your low adrenals anyway. Most GPs I've seen - and I've seen a lot! - don't even seem to know where they are. Mention adrenals and they just stare into the middle distance, looking vague. We can't expect them to know, and be capable of fixing, everything. And, they just don't have much education - if any at all - in the endocrine system. And endos aren't much better, because they've nearly all concentrated on diabetes, and don't know much about anything else. So, we're very much on our own with adrenals, I'm afraid.
I have just ordered a new cortisol/dhea test as suggested by seasidesusie. I have a thyroid test here for medichecks too. Last year my cortisol saliva test showed morning, lunchtime a little below optimal, evening optimal and night a little low. Cortisol /dhea ratio 7. Private doc said progesterone use was propping up the results. I was prescribed progesterone 2 years ago as levels were not detectable on blood test. Estrogen still high. I'm 62 and bleeding only stopped last year. My last thyroid test by doc was TSH 1.9 (0.35- 4.5) T4 13.9 (9-20) that was February on 68mcg. Since then I've had a few trips to hospital as heart palpitations very scary. I got a telling off and told to get off thyroxine. I was diagnosed by Dr F (on thyroid UK) I don't have hashimotos. Now that I have reduced the levo the dizzyness is bad. I have taken it down to 37mcg over past 8 weeks. Don't know what to do from here. I am now on high bit c and b complex along with all the others.
Private doc said progesterone use was propping up the results.
That's a weird thing to say. Don't know how that would work. I would ask for further explanations, if I were you. If he can't give one, then what he said was probably made up as he went along! Have you had your progesterone tested recently?
TSH 1.9 (0.35- 4.5) T4 13.9 (9-20)
TSH still too high, FT4 too low, only 44.55% through the range. Most hypos would want it around 80%. So, you were under-medicated on 68 mcg levo. And that's why you were having palpitations. But, I've never met or heard of a doctor that knew that. And, you have no FT3 results. You are only over-medicated if you have well over-range FT3. Yours is probably rather low, and that's why your heart is reacting like that.
I was diagnosed by Dr F (on thyroid UK)
I've no idea who Dr F is, but I expect your GP's nose is out of joint because it wasn't him that diagnosed you. They can be so childish!
I have taken it down to 37mcg over past 8 weeks. Don't know what to do from here.
Well, wait and see what your new test says, but I think you should be putting it up, now down.
Am I allowed to say Dr Frey? He said progesterone is pre cursor to cortisol so my higher level of progesterone is saving me from low cortisol? I'm at a loss, reducing my levo I have put on 10lb! I'm just scared when they say upping levo can cause adrenal crisis and as soon as my heart races I chicken out! I know my T3 will be low that's what brought the diagnosis my T3 was only 3 last year (3.1-6.8)
Well, you can say it, but I still don't know who he is. lol
OK, so you learn something new every day. But, it does seem rather irrelevant to the problem. Your adrenals are still a bit fatigued and need a bit of TLC.
So, who says that increasing your levo will cause an adrenal crisis? Is it actually someone who knows what he's talking about? You're not going to help your adrenals with such a low FT3. And, it's probably the low FT3 that is causing the problem with your heart. The heart needs a lot of T3. You don't have to increase rapidly, take your time, but decreasing doesn't seem like the solution to me.
How's your iron? Low iron/ferritin will also adversely affect hearts.
Can't you consult this Dr F again? What does he say about helping your adrenals?
He charges £149 just to look at test results! I have got myself a copy of Dr Peatfield's book and spent most of last night reading it. Hopefully it will give me the confidence to take his advice as it seems to be easy to understand the way he has explained everything. Thank you for your help and advice. Hopefully I will get the Adrenal test soon in post and take it from there.
After lots of advice here, test results and reading I'm now convinced my adrenals are in trouble!
Out of curiosity I've just checked the endos in my local(teaching) hospital....to a man and woman they are all diabetic specialists. The chap (sorry, consultant) I saw last year was clueless about thyroid issues and I hold out no more hope for their knowledge of the adrenals!
The door was left open to me as I left determined to self medagainst his advice....it worked to quite a degree which left me convinced something else is at play. Test results suggest adrenals are knackered!
Following other great advice from humanbean I had an adrenal cocktail yesterday.....heart rate and BP rose but not excessively. Should I persist or stop?
Now I'm up a creek but still clutching my TUK paddle!
magsyh .....sending you best wishes and with fingers crossed for everyone in this mess
Apologies for butting in on Greygoose's response to you
And...
Bramble83 shared this with me yesterday, I found it helpful, it might be of interest
We are all in this mess together! I've been pulling my hair out in frustration for years. Part of my problem was 8 years ago I was given 2 shots of Lupron. I had extreme headaches and my BP was through the roof. They stopped the injections because of my bad reaction. I have discovered since that Lupron damages the hpta axis so I often wonder if this is why no doc will listen to me coz it's all their doing!
I very much doubt that is the reason. They don't listen to you because they don't know anything about adrenals. They know little enough about thyroids, but adrenals are even more obscure as far as they're concerned. They would have no idea what to do about them.
Following other great advice from humanbean I had an adrenal cocktail yesterday.....heart rate and BP rose but not excessively. Should I persist or stop?
What were heart rate and BP before and after?
The adrenals do have an effect on both heart rate and BP, so it would appear that the adrenal cocktail did something. Whether that effect was desirable only you can decide.
If you continue taking an adrenal cocktail (AC) it might be a good idea to keep records of heart rate and BP before you take the AC and, say, 30 minutes afterwards, and/or an hour afterwards. If there were no unwelcome effects after a couple of weeks or a month then you could cut down on the record-keeping.
If you are worried about the effect of the adrenal cocktail there are a few things you could try before giving it up.
1) Don't drink the adrenal cocktail all at once - sip it and spread it out over a number of hours.
2) Halve amount of salt and potassium.
3) Try experimenting with time of day when you take it.
Eventually, if you find the effects of AC undesirable, then just stop taking it and forget about it. No point in flogging a dead horse, as the saying goes.
My heart rate rose from 75 bpm to about 85 and my BP from 146/65 to 158/73 and I felt a bit shakey. I thought I'd better stop it for 24 hrs and check again.
Today HR is 75 and BP 144/58.
I'm on BP meds but since T3-only my SYS reading has thankfully dropped.
I'm not ready to give up yet so for a start I'll have a go with half salt and potassium.....and sip!
I can't say for definite, I can only make suggestions.
I can tell you what makes my heart speed up though, and these were all discovered with experimentation :
1) Low levels of iron and/or ferritin. Optimising my iron levels and then taking a maintenance dose of iron supplement to keep them optimal has had a serious (beneficial) effect on my heart speed and heart rhythm.
2) High blood sugar levels - my heart will race if ever I binge on sugary stuff. I'm a carb addict with little willpower. I noticed the effect of sugar just by chance but have found by experimentation that it is extremely consistent - if I eat too much sugar my heart often goes much too fast.
3) Low levels of magnesium disturbs the rhythm of my heart. Low magnesium has more of an effect on the rhythm of my heart rather than the speed.
4) Low or high levels of either salt or potassium or both. Either or both of these can disturb my blood pressure more than my heart rate.
5) Deranged (either low or high) levels of cortisol might alter BP and heart rate.
6) Deranged (either low or high) levels of T3 might alter BP and heart rate.
I've had to use a lot of trial and error, and just getting to know my body and what it reacts to to find out what I know about my own reaction to various triggers.
If you don't have Addison's or Cushing's, then I doubt they are beyond help. As long as you keep them working, they can always bounce back - or creep back. Just be gentle with them.
Magsyh, I think the most important point about adrenal fatigue (big umbrella term that is called by many different names), is that a conventional doctor will have nothing to do with it and will never offer you any treatment and probably not even acknowledge it. It's for self treatment only.
The thing that really jumps out to me is that you're on micro-dose of Levothyroxine. Usually a starting dose is 50mcg, and best practice is to retest this every 6 weeks and make adjustments of 25mcg. Many people will feel worse while on low doses, and will only start to feel consistently better when they get up to around 75mcg and above. Typical doses are in the 100-200mcg range. Clearly you've been started very low and had adjustments in very low increments, even while you're blood tests show clear undermedication.
What I conclude from this is you've had very poorly managed treatment, and you're probably nowhere near being on your ideal dose. This means you are likely to have vitamin deficiencies, as well. While seriously undermedicated as you are, it can be quite hard to unpick what is an adrenal issue, what is a thyroid issue, and what is a low vitamin issue. These three things go hand in hand and all feed off each other, so if you get improvement in one area that supports the other two as well.
In the first instance I suggest looking into all three. Although I also suggest doing it at a gentle pace - work on one piece of the puzzle for a few weeks or months and only read about that, then move onto the next thing. Treating vitamins can be low hanging fruit, because some things like vitamin D are relatively simple to treat. Correcting low vitamins also helps your adrenals.
I also suggest workin on lifestyle factors, as to me these seem (relatively) simple. Rest more, reduce stress in your life, reduce work and energetic activity, learn to meditate or do relaxation exercises, exercise gently.
Besides these basics, treating the adrenals is a lot more open ended than treating the thyroid, with many avenues for treatment. There are many adaptogenic herbs that can nudge them in either direction. Also adrenal glandulars. And many other suggestions made by websites like Stop the Thyroid Madness, Dr Myhill and others.
In addition to looking at adrenals, I'd say you desperately need to find a doctor who will treat your thyroid properly. Sometimes this is a doctor hunting exercise, and requires trying out a lot of doctors. I tried three private ones before I was ready to self medicate, which is sometimes what we end up having to do.
Thank you for that. I have read Dr myhill and yesterday got myself Dr Peatfield's book which I spent most of last night reading. He seems to simplify the treatment of adrenals so hopefully I can use it as guidance.
Private doc looked at it and said my cortisol would have been even lower if I hadn't been using natural progesterone.
Chronic stress is also a big contributor to progesterone levels. When your body is stressed, it works to produce higher levels of the hormone cortisol which manages stress in your body. Because progesterone is the precursor to cortisol, when cortisol levels increase, progesterone levels decrease.
In order words - he is dead right.
I was unable to take progesterone cream or tablets as it was too much - my problem with progesterone is via the adrenal gland hence why I am taking something that is going to hit that route instead.
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