Hello, I have some new results and a question. I’m still thinking about thyroid meds, my memory issues, brain fog and light sensitivity are still awful. I can’t work or concentrate on anything. My ferritin has come up to 40 but I’m on high doses of iron.
My fT4 and fT3 results are exactly the same as I got in August 2020. I then had them done in May 2021 (posted in bio).
My gp offered to trial me on some levothyroxine only because I asked last yr after reading this group and posting previously. I don’t know whether to take him up on that, or ask for an endocrinologist and and risk the endo saying no to levothyroxine and then my doctor saying no as well. I am in Canada.
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Snooperkitty21
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Here is my TSH as that gets run a lot more often. I asked my dr to run the full panel. It’s always my idea because he thinks I’m fine but I can’t function. Open up the photo to see 2 actual TSH numbers for reference. 🙂
Snooperkitty Your levels of thyroid hormone are low in their ranges which is probably why you have the symptoms. Your GP is willing to start you on levothyroxine BUT is the GP willing to give you a high enough dose of levothyroxine?
If the GP starts you on 25mcg per day or even the proper starting dose of 50mcg per day and is then unwilling to increase from that you may end up worse off. Why? Because once you start taking levo, the body which has been struggling to produce enough thyroid hormones reduces production and unless your dose is enough to more than make up for this you end up worse.
Exactly what I think too. I’m really struggling with low iron and am not sure if my low iron is reducing my ft4 and ft3 and also why is my TSH good? Shouldn’t it be higher?
I fell like I’ll have to go to my GP, accept his offer and ask to be started on 50mcg and tell him that if I start, I need him to be on board with frequent testing and increases. I think at that point he might panic and refer me to an endo 😒 switching directors is hard in Canada also.
Spot On. Lab results don't say the full story. Cellular symptoms are the most reliable results. Labs are just a snap shot of the moment the labs where done.
I just feel weird all of the time, can’t focus on tasks/reading/tv, can’t handle lights, depersonalization 24/7 and I am basically asking for so many blood tests to try to figure out what’s wrong with me 😫 for 3 years and I don’t know if it’s thyroid or not. No doctor is telling me it is, I’m just trying to figure it out. Don’t know what’s actually wrong.
On those labs & with your symptoms, I would definitely be going for replacements meds. TSH isn’t a reliable indicator of hormone levels as evidenced in your case. You may even have central hypothyroidism which is when the problem lies with the pituitary gland which may never secrete the required amounts of TSH to raise thyroid hormone levels enough for well-being, and treatment is the same and that is thyroid hormone replacement meds.
As Lalatoot has suggested it is imperative you have enough meds as thyroid hormone can not be topped up because adding additional amounts usually skews thyroid signalling and production commonly decreases. However, because of your symptoms of vertigo, derealisation, light sensitivity, etc, I would say poor adrenal health is heavily implicated and should be addressed before or alongside any thyroid hormone replacement meds. Thyroid meds should also be introduced in low amounts and very slowly even at the risk of levels momentarily decreasing.
I suffered all this for years which only improved slightly after medicating Levothyroxine. It was awful and I ended up having 3 days of psychosis after years of low adrenal reserve was simply ignored by the medical profession as was never quite low enough for an 'adrenal-insufficiency' diagnosis.
Long term under-performing thyroid function will eventually compromise the adrenals glands which step up to support the low amounts of thyroid hormone. All alternative medicine would suggest that adrenal reserve was always rebuilt before thyroid meds are introduced. This allows the withstanding of the increased metabolism that thyroid hormone replacement meds will produce.
There are many supports for adrenals in the form of glandulars, adaptogens or just simply making lifestyle changes. Do you have a alternative practitioner who could work with you? Also, its worth revisiting/retesting iron and nutrients to ensure all are going in the right direction as these are necessary cofactors in making thyroid meds work effectively..
I have suffered vertigo I had no idea what the hell was happening to me and I was keep on getting for years and now my gp has sent me to ENT see what happens. It came to a stage I didnt trust myself and ig felt as if I had a seizure which I didnt have thd energy nor able to open my eyes. Still not proper examined also not seeing my own drs. Is they anything I should ask about this that someone has mor information please do let me know.
What is the symptoms of adrenal? I feel I am struggling and my anxiety, phobia gets best of me where I cant explain not think straight. I have put weight and now been told my my sugar levels are high my mid section is fat. How do you know if they have put you tight thyroxine as I am given 50mg. I cant concentrate if a movie is on everybody has noticed that I never watch it from the beginning to the end I'm like I'm always agitated and I don't have the feeling of tidying up even the smallest thing that business be picked up and put away I just can't do it and very forgetful as well it's not helping because I noticed how I react to things as well.
Your previous posts refer to hyperparathyroidism. I don't know a lot about hyperparathyroidism but if you start a new post with "Hyperparathyroidism" as the heading it will attract members who have experienced it also.
I also notice you are now medicating 50mcg Levothyroxine so have hypothyroidism too. The test results you are looking for are TSH, FT4 & FT3. Also any iron, Vit B12, folate & Vit D results complete with ranges (numbers in brackets). If you put these into your new post, members will comment.
I am sorry to hear you are still feeling so unwell.
Thank you for the wonderful and detailed advice! I really appreciate it. I do have a naturopath I’ve been seeing and I will see him again in January (due to insurance). I did have a brain MRI last year that didn’t show anything but am wondering if a pituitary issue would show up on that?
I found some “Freshfield Aswaganda and black pepper “ supplement that I can order and it says it’s an adaptogen.
Thyroid meds should also be introduced in low amounts and very slowly even at the risk of levels momentarily decreasing.
Would you mean less than the recommended 50 mcg starting dose? I was going to ask for 50 but I could ask for 25. I don’t know. My dr is probably going to offer 25.
As you haven’t yet started thyroid meds I would firstly discuss with your naturopath because he may want to get cortisol/DHEA levels tested to see where they lie regarding supplementing, and address any iron/nutrients deficiencies before introducing thyroid meds. I so wish I had known to do this.
My own GP started me straight on 100mcg Levo that instead of resolving symptoms just added more in the form of Afib & chest pain, breathlessness, muscle aches, insomnia, renal issues in that my GFR dropped & I started pee’ing proteins. Even my eyeballs felt full & hurt to move from left to right, & light sensitivity was awful. If not almost bed bound I was certainly practically house bound.
Ashwagandha was one of the adaptogens I was given by a private nutritionist, and still take it on & off 6 six years later. She also suggested several of Dr Wilsons adrenal supports (Vit C & other adaptogens), nutrients to address deficiencies (ie VitB12, Vit D, etc), NAC & other antioxidants, curcumin and something called Kaprex A1 for inflammation. I was extremely deficient in zinc so supplemented Aqueous Zinc and later selenium (these should balance). All supplements were premium & it was expensive but it got me well and my body accepting & utilising thyroid hormone effectively.
Many members have difficulties with thyroid hormone meds because cofactors such as iron or cortisol aren't being adequately met. My own deficiency in zinc risked huge ramifications and I was totally unaware. That is why I suggest you seek help from your naturopath (or someone familiar with the pitfalls of introducing thyroid meds) to guide you on your recovery journey because you might find additional barriers. For instance I was recommended to have all amalgam removed and needed supplements to help detoxify oestrogens.
What dose of meds? .....I am not medically qualified, just speak from experience & if this were me doing it all again I would either address adrenal issues & nutrient deficiencies first and then introduce 50mcg Levo say six months later, or if starting all treatment together I would start on 25mcg Levo with the aim of building 25mcg every six weeks or holding each dose longer if there was no seen improvements re vertigo symptoms.
You most likely won’t see whole improvement until optimally dosed for several months but when we have suffered a long term deficiency small positive changes can be felt quite quickly if adrenals & other bodily systems can withstand. I'm now six years in & have an energy level which is quite high and so adequate, but must still be mindful not to overstep or it can make me feel unwell/unbalanced for several days after. This appears quite common in people who have suffered adrenals issues.
Thank you very much for all of this. I read it a few times. I’ve been feeling like this for 3 years and have been trying to figure out why. I’m 41 and female also. I’ve been taking high dose iron pills for 1.5 yrs and it’s not moving much, I can’t get infusions and that’s why I’m getting an ablation soon. I’ve been on b12 shots for 1.5 yrs as well.I have had my cortisol and DHEA tested via blood, my doctors advised against saliva due to cost and not being always accurate.
Cortisol AM is 438 (135-537)
DHEA is 3.3 ( <9 )
Sadly my naturopath believes those thyroid labs are normal. I can see if he’ll check my selenium and zinc as I haven’t had those tested.
Funny my husband came home with a bunch of supplements for himself and one was Ashwagandha! I read it and then ordered a bottle myself so hoping it does good.
An 8-9am cortisol blood test is a snap shot of levels closest to their nocturnal peak. The circadian pattern means the highest should be seen early morning taping off throughout the day until bedtime. Saliva tests taken at various points over a 24 hour period allow better assessment of circadian patterns which often becomes skewed with low thyroid function. Adaptogens can encourage more/less production of cortisol or better utilisation so balancing out levels & normalising circadian behaviours.
Your levels are lots better than mine were but be aware if you’re oestrogen dominant (peri-menopause) or using oral birth control/HRT, this encourages more CBG that can raise cortisol levels. Labs may use different ranges but as a rule over 350nmol/Ls is enough for good function and to gain further well-being with supports, and I would start Levo asap. Good absorption & usage of iron and adequate thyroid hormones are intricately linked so you may find your iron supplements eventually start raising levels.
I’m having a uterine ablation in 2 weeks because I can’t keep my ferritin levels up and have to stop all supplements until then unfortunately. I will ask my dr about the levo after that. Thank you again!
I’ve raised my ferritin level to 67 but still don’t feel better so I am starting on levo tomorrow as a trial. My dr gave me 25 mcg dose which I thought was good based on our conversation above. I meet with him in 1 month to see how I’m feeling.
Remember you are between a rock & a hard place, because generally as soon as we start replacing thyroid hormone with exogenous supply the pituitary will start reducing own input, and your TSH is also skewed showing some some disconnect within the HPT axis (possibly Central Hypothyroidism).
Levo dose is usually started at 50mcg (sometimes higher) & increased every six weeks until optimised evidenced by labs as symptoms often lag behind good biochemistry.
You are starting at just 25mcg given possible adrenal issues (vertigo, lack of focus, light insensitivity, depersonalisation, etc) so be aware thyroid hormone levels may not increase until your next raise (& possibly even drop).
If you feel ok I would ask your GP for another 25mcg in six weeks and test to see what is happening. Most peoples total need of replacement is at least 75mcg or 100mcg Levo but your tolerance of increments must be considered as to how quickly you will achieve these levels.
It's good your iron levels have improved because iron deficiencies & hypothyroidism are so interconnected as are both the driver & result of each other.
Thank you so much Radd, I am very nervous to start thyroid meds but have been suffering so long and cannot work due to symptoms so I need to explore everything. Sometimes my tsh goes to 2,26/2.46 etc so that’s why I think my thyroid is beginning to struggle.
I read this forum daily and am armed with info thanks to everyone here. It’s much appreciated. I will make a new post in a few weeks after I try levo!
I am absolutely useless on these things so I would really like someone to really explain these thing about how these blood test work or what is normal and what isnt. So I need share one and if i need help in anyway. These days its ridiculous to see a dr due to this covid thing but hold on if you can go back to normality with work, or out and about than why is it that we get these GPS making excuses in not seeing you. I dont get it. Why is it okay to visit the nurse for blood test but unable to see the doctors. Something is not right.
What us normal thyroid hormones.
B vitamins
I am losing alot of hair and I cant seem to shift weight at all. I feel very low,pains in joints. Just feel miserable don't like going out just feel I don't even know what I feel just feel numb. So my beautiful people please help me to understand all these nitty gritty things. I cant walk because of my pains.
To get the full picture with people being able to help you really need to get further blood tests which include vitamin B12, D, folate and if possible full blood count. From my own experience, reading other people’s and researching the thyroid is so often affected by these and if one is out of kilter it can have a knock on affect. Once you have the results you can see if it’s thyroid affecting alone giving symptoms or a combination.
Thank you for the reply. I love reading on here and do every morning. This group is fantastic! I do luckily have all of those tests done. Vitamins B12 is optimal at 644 nmol or is it pmol (on shots) but was low 175 nmol before shots.
Vit D is optimal now at 156 nmol (75-250) but was low at 63 nmol.
Folate has always been optimal.
My full blood count is good, I was anemic last year but when I started taking iron my hemoglobin went to mid range and has stayed there. It’s my ferritin and iron panel that are not good. My ferritin is finally 40 up from 11 in March 2020. My iron panel is all bottom of the range but I’ll get it retested in December. I’m also getting a uterine ablation for heavy periods this month.
That’s good news regards your other results, so many people are unaware the effect one can have on the other. The only other thing I could mention….I’ve not read all your replies so sorry if I’m repeating……but just to mention if you’ve had your thyroid antibodies tested as that can through the levels around. It’s a nightmare isn’t it trying to pinpoint but at least with the net at least we have some chance of helping ourselves 🙂x
How I feel for you. I do hope you can get some help from Health Unlocked. I am struggling myself at the moment so I'm afraid im no help to you other than to say I know what you are going through. I'm trying different things B12 supplement. D3... even tried CBD oil... I too have a lot of pain & a jumbled head!! Best wishes 🤗
Me too! I’m reading on this forum but my brain fog can’t handle a lot of it so I do it bit by bit. I use my Notepad on my phone a lot and set calendar reminders for everything!
I got the blood testing kit but the Drs response on my results was that I was hyperthyroid not hypo!! I was going to reduce my thyroxine but the response from the thyroid admin was that I shouldn't reduce my thyroxine but boost my vits. So I will do another bloods soon and see if things have improved... But I dont feel any better to be honest... A foggy brain & considerable pain, not sleeping etc!!
Wow that’s a struggle and it seems never ending. I hope the boost in vitamins works for you. I now take a lot of vitamins and I didn’t take any before I started feeling bad.
I’m really struggling with low iron and am not sure if my low iron is reducing my ft4 and ft3 and also why is my TSH good?
Low iron will lower TSH. Low TSH will lower Free T4 and Free T3.
Do you take vitamin C with your iron supplements? It will improve absorption of the iron. Vitamin C can also help to reduce the problems with constipation that most people get with iron supplements. You can increase the vitamin C you take if constipation persists.
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You mentioned in one of your posts that you were taking 300mg of elemental iron per day. This is (in my untrained opinion) too high a dose and your body is likely to absorb little or none of it. It also increases the risk of it getting deposited in your organs. The body has no natural mechanism to remove excess iron so taking extremely high doses is not a good idea because it may cause problems. I'm not sure what happens to iron that is not absorbed - I seriously hope that it gets excreted, but I really don't know for sure.
When the body is given a lot of iron it creates more of a substance called Hepcidin. The level of this determines the amount of iron absorbed in the gut. High levels of Hepcidin reduce or stop iron absorption altogether when iron intake is very high. In other words there is a limit to how much iron the human body can absorb per day, and trying to hit the body with a lot of it may actually reduce absorption to zero or close to zero.
I didn't know anything about Hepcidin when I was raising my own iron. (I think it was only discovered in 1998 and knowledge of its existence and function took a while to pop up in the literature.) If I was trying to raise my own iron now (which I'm not), I would try a much lower dose of iron than I was taking previously (a total of 207mg per day). It took me nearly 2 years to raise my ferritin to mid-range with ferrous fumarate 210mg, one tablet three times per day, then I started experimenting to find my maintenance dose. Once I found it I continued taking iron for about 7 or 8 years.
Note that people can be iron deficient without being anaemic. But deficiency needs treating whether the patient is anaemic or not.
If I was severely low in iron now I would try to do things differently than how I raised my iron in the past. I previously took ferrous fumarate 210mg which contained 69mg of elemental iron per tablet. Now I would try ferrous gluconate 300mg which contains 35mg per tablet. The maximum dose of this is 4 - 6 tablets a day, and I would start with one taken once a day, then add one tablet every 4 - 6 weeks if testing showed I was still absorbing poorly, until I found out when my absorption was maximised.
When the body is given a lot of iron it creates more of a substance called Hepcidin. The level of this determines the amount of iron absorbed in the gut. High levels of Hepcidin reduce or stop iron absorption altogether when iron intake is very high. In other words there is a limit to how much iron the human body can absorb per day, and trying to hit the body with a lot of it may actually reduce absorption to zero or close to zero.
^^^ Recently read about this and found it helpful to think about moving forward. Hopefully others will benefit from you sharing the info
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