I finally bit the bullet and paid the £££ to get some tests done using Medichecks and Blue Horizon. They are all blood tests apart from the salivary cortisol.
I'd appreciate comments on what they mean and any advice:
PROGESTERONE (day21) - 2.9 nmol/L ref range: luteal 5.8 - 75.9 (Dr commented that this is very low)
Waking 5.13 (14.0 - 21.0) / 12oclock 3.61 (4 - 9) / 4oclock 3.84 (2.5 - 7.0) / Bed 1.70 (0.8 - 4.5) -- (Dr commented that this was low, and could signal Stage 3 adrenal insufficiency, but that it is not a recognised condition)
I got a blood test for B12 on the NHS which was 'normal'. I've been trying to get the ranges for this but they are being quite obstructive at the surgery; if i can get them I will post that too.
I have many symptoms in my luteal phase and I have Endometriosis, but the problem that's really been the overriding one is that for the last year (year and 2 months, to be precise) I have had very bad fatigue and it's really affecting my life. I do have good days, but I am not able to exercise any more, i have not been able to work and i spend too much time at home. It's quite depressing. It's as if my battery gets flat really easily, and never really gets fully charged. Exertion, going up stairs, being in a crouching position, being cold and stress all seem to trigger the worst bouts of fatigue.
I am not over or underweight, and I am 42.
Any suggestions very welcome.
Thanks!
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mountaincat
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If you are on levo your TSH is too high it should be round 1 or less and your FT4 is too low it should be in the top quarter of the range. Therefore you need a dose increase.
I suggest you pay for your own ferritin, vitamin B12, folate and vitamin D testing plus get FT3 but wait 8 weeks after you have a levo dose increase to see if it has worked.
Sometimes it is wise to pick your battles with a GP surgery and in your case getting a dose increase is the battle you are after first.
Unfortunately, the test doesn't show an FT3 result. but according to your clinical symptoms I would say you are hypothyroid (I am not medically qualified) and we can develop clinical symptoms long before we are diagnosed.
In the UK the guidelines state that we haven't to be diagnosed until TSH is 10, which is horrendous when people can have symptoms even before it reaches 5. Some doctors will prescribe when TSH is near top of the range.
I looked at your Profile and there's no history in it but I see from some of your past posts that you have had illhealth for quite sometime. I am assuming you haven't been diagnosed as hypothyroid but you might have been.
No, I haven't been diagnosed as hypothyroid. I joined this group because I'm trying to figure out what's wrong, and from this group I learned about the possibility getting private blood tests. I would quite like to either rule out thyroid problems or investigate further/self treat if it appears that thyroid is an issue. My GP did some thyroid tests last year, but I don't know the ranges.
My GP is suggesting I have Fibromyalgia, but I am not convinced as I don't have chronic pain/ pain throughout my body.
My symptoms are : fatigue is the big one (physical tiredness, heavy weak limbs, the need to sit or lay down after small exertions); bad PMS (paranoia, depression, confusion, making mistakes, clumsiness, irritability, mental agitation, nausea); sharp severe pain during or before bowel movements (possibly caused by Endometriosis); IBS symptoms; muscle tension in neck and shoulders; Frozen Shoulder (adhesive capsulitis); I always need to urinate during the night; I wake up feeling very tired and with tense muscles.
I am intolerant to the cold, my skin is very dry and papery of late, i get muscle aches in my limbs when the fatigue comes on.
I don't have hair loss and I haven't put on lots of weight ( I have gained a bit over the last few years, but could just be my age)?
I just want to get some idea if my Thyroid results look off, or if this is a red herring. Fatigue can have so many causes, and I think my GP wants to put me in a category marked 'fibromyalgia' in order to 'resolve' the issue. Fibromyalgia means there is nothing that can be done
Right then do a formal Data Subject Access Request under the Data Protection Act 1998 and ask for your vitamin B12 results and ranges. It will cost you £10 and the correct way to do it so your surgery cannot refuse to give you the result is on the Information Commissioners website. In short you send a recorded delivery letter or hand deliver a letter with the fee enclosed.
In your case I would go further than that and ask to see all your medical records. That will cost you £50 and you will have to take pens and a note book with you so you can make notes as the £50 doesn't cover the cost of copying them. Your GP will ask why you want to see them and you should simply say you want to find out what else there is in your medical records that could indicate why you feel unwell. They will then make you arrange an appointment where you can sit down and go through your notes in your own time. You want to note down all blood test results and ranges from as far back as possible as there are a few posters on here with abnormal test results that showed up more than twice that were ignored by doctors for years and in some cases decades which indicated they had other problems e.g iron deficiency, low white cell. Plus comments by consultants when they discharged you back to your GP.
If your surgery is difficult e.g. ignores your requests, acknowledges them then does nothing or openly refuses you, complain either to the Information Commissioner or your MP in person.
Only once you have done that bother to have more testing if necessary.
This might surprise you as the 'modern' method of diagnosing ignores ALL clinical symptoms of hypothyroidism of which there are over 300. The medical profession has been told, I believe, that only the TSH is significant and not to prescribe until the TSH is 10, whereas in USA it is 3+. Why such a difference in the UK - I have no idea. For Fibromyalgia - a lot can be done
The method of diagnosing and treating hypothyroidism in the UK is if your TSH 'fits the bill' whereas they ignore all and every clinical symptom the patient complains of but are willing to prescribe other medication for the symptom which might not solve it.
TSH 2.84 indicates your thyroid is beginning to struggle but FT4 15.21 is normal for someone not taking Levothyroxine. Symptoms can precede abnormal bloods by several years. NHS won't usually diagnose hypothyroidism until either TSH is over range or FT4 below range.
Your progesterone levels are low and I have read that low progesterone can cause lots of symptoms similar to hypothyroidism.
I have a friend and a cousin with endo. They both had awful symptoms and generally felt very unwell, run down and tried all the time. My cousin had a hysterectomy and my friend had a mirena inserted (contains progesterone). Both of them felt 95% better after this. Both said that these measures changed their lives.
Think, however, you need your B12 result. You should also get tested for vit D, folate and ferritin. All can make you feel very unwell if low. Post results on here with ranges and members can give you advice on supplementation if needed.
I have PCOS, possibly endo but not diagnosed. I have just had a blood test back that indicates I am hypothyroid. I have lots of symptoms, feeling exhausted is the worst. I am interested in our results as I had an oestrogen blood test done several months back accidentally mid-cycle and the results were super high - way way above the reference range for that time of the month. Have not been able to find out much about what this means though. Read lots about oestrogen dominance but there doesn't seem (that I can find) to be any medical evidence supporting this. Am thinking of testing my progesterone levels privately as would like to see if they are low. My symptoms are also much worse in luteal phase. I feel so much better when period starts! Although then super heavy periods and pain begin!!!!
Interestingly, I have also read that increasing progesterone can raise thyroid hormones. Although I can't find any medical evidence saying that low progesterone actually causes hypothyroidism.
I have read lots about natural progesterone creams. Lots of supportive anecdotal evidence but the medical evidence I've read seems to say it's not well absorbed.
My next step is to get onto thyroxine, and then look at progesterone. Possibly trying cream first and if that's no good, thinking about a mirena.
Would be interested to hear about how you get on and what you try/your results.
Went in person to surgery yesterday to get printedresults, again they said they weren't there and I'll have to go back. I'll give it one more try and then I'll go through the formal process. thanks for all the comments so far, hopefully i'll have B12 results soon..
OK I got my B12 results, it's on a page full of all the tests done last time. I could post all the results, but I don't know to add an attachment to a post - maybe you can't?
Anyway this is what appears to be the B12 section:
Hello, I'm wondering if anyone can comment on my B12 results from my last post?
I'll put all the results of my blood tests together to make it easier to view. My main symptom is fatigue, I don't have enough energy to live a normal life anymore, been this way for about a year.
Waking 5.13 (14.0 - 21.0) / 12oclock 3.61 (4 - 9) / 4oclock 3.84 (2.5 - 7.0) / Bed 1.70 (0.8 - 4.5) -- (Dr commented that this was LOW, and could signal Stage 3 adrenal insufficiency, but that it is not a recognised condition)
mountaincat - this is a delayed response. I came across this post when looking at your most recent one about referral to an endo (great!). I don't know much about low progesterone or low cortisol (i'd be interested to hear your endo's advice as it sounds like our situations might be quite similar), but what I do know from looking at these test results is that your ferritin is very low in range. You will want to start supplementing with iron to get that level much higher. That might account for a lot of your fatigue. I don't know enough about optimal levels to recommend where you want to get to in range but if you make another post on the forum i'm sure more experienced members can help you there (but I think you want it to be about half way through the range and yours is right at the bottom). Your B12 looks pretty good to me but others will be able to give you better advice there. Hope that helps.
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