Hi. I am new to this forum . Happy new year and thank you for the new info I have found via the forum.
I have an underactive thyroid, on hrt, lupus, Hughes syndrome, severe stress, etc.
Started on 50mg levo and reacted badly. Dose dropped after I suggested to gp starting at 6mg , half a 12.5 . Then slowly increased to 50 and was steady for rew months. Symptoms of underactive thyroid increased, anxiety extreme on waking and spikes during day. I know a little about CAR cortisol awakening response, which is a huge panic attack every time I wake. Even after short sleep. I don't sleep for more than a couple of hours. Then just doze for an hour, panic wake, calm down doze.
We lost our 11 week old granddaughter 2 years ago. Coral.
And losing Coral broke us as a family and people.
And brought up a lot of my historical stuff around severe loss. As I am an adult adoptee.
I know quite a bit about trauma and its effects.
I don't know my thyroid and other levels at min. I will get print out from gp.
I feel extremely anxious which spiķes through day and night. And low.
Fatigue , lack of interest in anything, just lost.
What do I need to tell gp to test for blood?
Thyroid seems to be getting worse. Hrt had to be reduced due to womb lining thickening. And had biopsy recently after a miscarriage when I didn't realise I was pregnant in Nov.
The cortisol seems to follow a pattern.
Any advice please.
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Dawnm10
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Fiirst of all, I am so very sorry that you lost your grandaughter and that, in itself, is very stressful along with the grieving plus your hypothyroidism.. There's no quick fix and we feel more unwell due to grieving for Coral.
It's no wonder you feel unwell - you've been through a mountain of stressful situations and sometimes our bodies cannot cope as we'd like them to be.
Take your time, and relax as much as you can until you feel much better. Due to us having hypothyroidism we cannot cope as we would have done if not hypo.
My mother had four daughters but only two survived i.e. myself and my sister. So am aware of how much suffering it causes to lose a child. We never forget,
How long ago were you diagnosed with hypothyroidism? And do you know what your results were before you started levothyroxine?
If you’d had under active thyroid for a while, it’s likely your ferritin/iron, Vit B12, folate and Vit D levels dropped. When hypothyroid folk struggle to tolerate levothyroxine it’s often because there’s a nutritional deficit caused by the hypothyroidism ( gut absorption lowers as a result of every cell in your body going on a “go slow”). Low iron/ferritin is one of the more frequent culprits when people find it hard to tolerate levothyroxine.
Do you have results for ferritin/iron, B12, folate and Vit D? If not, it would be well worth asking for levels to be tested.
Welcome to our forum, and I’m sorry to hear of your sad loss.
Cortisol is produced by the HPA axis (hypothalamic–pituitary–adrenal) as an adaptive response to environmental stressors and can become permanently elevated with constant stress. Childhood trauma can advance into adulthood and long term elevated cortisol levels can make changes that are destructive to our health, including altering thyroid hormone physiology (changes to transporters, enzymes, etc). Chronic stress symptoms may mimic those of hypothyroidism such as weight changes, poor memory/focus, etc so it can be difficult to know what is causing what.
With regard to your knowledge of CAR have you had cortisol levels tested? A GP will only test serum cortisol offering a snap-shot of levels in that moment but as cortisol has a circadian pattern that varies with stress, members often use a private saliva-stress-test giving results over 24 hours. These are not usually accepted by GP’s but useful to ourselves for appropriate supplementing of adrenal supports. It is also useful to have DHEA tested together with cortisol as this can give some indication to depth of adrenal reserve insufficiencies.
How long have you been medicating Levothyroxine? In view of you having Lupus, have you been tested for thyroid antibodies TPOAb & TGAb?
It’s great you’ve managed to raise Levo to 50mcg but you will need TSH, FT4 & FT3 levels testing six weeks after your last dose raise to assess if further increments are required.
When GP's are uncooperative in comprehensive thyroid testing, members use private labs.
Low thyroid hormone can instil gut changes that result in poor nutrient absorption. Ask your GP to test Vit B12, folate, Vit D, ferritin which are commonly deficient. Low iron levels can also make Levo difficult to introduce/raise.
I’m surprised you are on HRT with Hughes syndrome, and if it is oral you might need higher doses of Levo. Which HRT are you taking?
Post any results complete with ranges (numbers in brackets) for members to comment.
I use hrt with estrogen gel, and progesterone pessary. Due to hughes syndrome.
I am having more blood tests tomorrow and asked my gp to test T3 and T4 plus ferritin plus vit d . I will get print out from now on to keep track.
I still think 75mg is too low as symptoms still keep returning. Symptoms ease when the dose is raised then seem to return.
I haven't taken b complex, flaxseed , vit d ,c zinc for a week after reading on here not to take supplements for a week prior to blood test.
I did explain to gp I have advice from thyroid UK and did explain why blood has to be taken prior to food, early as possible and after 24 hrs of last thyroxine dose. She didn't know .
Stress has always been high , pre birth.
My 16 yr old birth mother was pregnant in the 60s and had no choice but to give me away for adoption.
This in itself is trauma and has led to life long damage.
Losing our granddaughter was the point (probably several other times in life) when I broke.
The cortisol is something I had to find out about as I know it's having a significant affect
I will look into the hpa axis as I need to know what is happening now to me.
All I can add is that when we take Levo, the pattern of starting and feeling better for a couple of weeks and then symptoms returning until we raise the dose and feel better for a few weeks, perhaps longer than before and then symptoms returns is exactly what most of us have been through. It's normal and it goes on until you reach the dose of Levo that is right for you and then the improvements stay and the symptoms go and don't return. So you are right to think 75 isn't enough. You need a dose increase, but first get all those bloods tested and return here with the results of them all for more direct help.
Cortisol can also be triggered by low oestrogen. Alarm bells rang when you said your dose was lowered when your womb lining was noted as thickened. Wrong response. Instead you needed more or different womb protection. You say you are using a pessary for progesterone, so that will be Utrogestan. Are you on a cycle? 15 days on and 15 off? If so, and still having periods, consider the Mirena coil for the progesterone part of your HRT. I too had thickening and bleeding on a continuous Utrogestan use so I have the coil and love it. On top of that I still take Utrogestan every other night because it keeps my moods more balanced. If you have the coil then you can increase your gel until you feel better in that respect. I don't know how much gel you currently use but women are on 6-8 and sometimes more pumps a day under menopause clinics, so ask your GP to refer you to an NHS menopause clinic for a second opinion on how best to deal with your needs. Peri is a horrible time of terrible mood swings. You need enough oestrogen to smooth it out. GPs stick to the recommended doses of things, but the specialists know they can go further and will do whatever it takes.
It sounds to me like you need some trauma counselling, but I know nothing about that or where to find it. But it is something you should be asking for because you need to try to get on top of that for the future and to help your daughter.
Good luck with the collecting of blood results. It is possible to feel a lot better than you do. I used to wake up, bolt upright, heart pounding and brain full of nightmares every night at 2:30am. I knew exactly what time it was because it was always the same. That was a cortisol crazy turn. And I used to wake up feeling really anxious and upset and sort of fizzing inside every morning. It was horrible. All of that went away with adequate HRT and perhaps the thyroid replacement hormone helped, but I'm not stabilised on that because I have issues with it that mean I need T3, which I'm just transitioning towards. So my cortisol settling may all have been due to HRT. We need our blood levels of oestrogen to be over 150 pmol/L at least. I like mine around 400. But it can be hard to judge that during peri. Still worth asking your GP to test your levels though. Test at a point when your hormones would be at their lowest ebb. Right after your period finishes.
You still need birth control protection when on HRT until well into menopause itself (12 months in) as it possible to get pregnant easily at this changing time. Another reason to consider the Mirena coil for your HRT as it will deal with both requirements for you.
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