A few times now i have had a blood test and been diagnosed as 'borderline' hypothyroidism. However my symptoms are severe, my blood pressure has dropped in to 70's, i'm experiencing unexplained weight gain, loss of concentration, extreme fatigue, depression and coldness. My doctor told me there was no way to manage my symptoms as the cause is my thyroid, he said that until my levels drop further there is nothing he can do to help. Does anyone have any suggestions on how to manager hyo symptoms? I'm getting real down about it, i can hardly move because my energy is so low half the time! Any suggestions welcome!
Thank you all so much
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ilovedoggos
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Are you in the UK? May be different approaches in different countries. If you post most recent blood test results along with lab ranges you might get better advice here.
thank you so much for your response, I'm actually picking up some results tomorrow, I'll post them on this thread when I get them thank you very much and I am in the UK
Did you get the earliest possible blood test, fasting (you can drink water) as this gives us the best results. If taking thyroid hormones you'd take this after the test and not before.
Ideally instead of doctors just testing the TSH your FT3 and FT4 should be but not usually tested. That's why many on the forum get their own private blood tests.
If hypo, the aim is a TSH of 1 or lower and a FT4 and FT3 towards the upper part of the ranges - the latter two rarely tested.
I was exactly the same, GPS are just not interested, my TSH shot up dangerously high, I was just left for 3 months, told I was borderline, to come back for another b test in 3 months, but then they weren’t doing them because of Covid, so sent off to Medichecks to do self test, they do the full test, my results said make an urgent appointment with your doctor, doc has had a copy of results over a week ago, heard nothing back, that’s how urgent they are taking it! Now is the time to start demanding some feedback I think. 🤬
As Nanaedake comments, we really need to see recent test results.
That said, your symptoms sounds like frank hypothyroidism, not subclinical. Subclinical hypo is often determined by doctors on the numbers alone, but more properly it is a condition where the results of a thyroid panel indicate a problem is brewing, but the patient is still asymptomatic.
You're in obvious distress with the symptoms you describe, and I think your doctor is being pretty sadistic in leaving you to suffer without treatment. We know from experience that prompt treatment is more likely to have a good outcome than an enforced delay.
thank you so much for the response, I'll be positing my results on here tomorrow. thank you for being so understanding, I'm only starting to do my research now and look into this properly out of pure frustration.
that's really interesting and helpful to know, I'm aware in his opinion it's another 6 months wait now. I'm just not sure how to even function for 6 months like this!
Thank you again! results will be posted tomorrow! feeling better to be part of the community!
This is such a key point for so many On Here - including me - docs can give Levo when the tsh is above range but lower than 10 and there are symptoms. If only they knew!
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Frequently GP will have ONLY tested TSH
Ask GP to test vitamin levels and thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Typically we start cautiously with Hashimoto’s, at 50mcg levothyroxine dose. Bloods should be retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical
hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Technically because Ft4 is (just) within range you are classed as “sub clinical” .....but guidelines recommend starting treatment if symptoms are present
1.5.2 When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3 Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose.
Essential to get vitamin D, folate, ferritin and B12 tested
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
it's so frustrating, I'm going to use the really helpful links and information you've provided and seek help elsewhere, I'm concerned about going back to work and not being able to function!
"he said that until my levels drop further there is nothing he can do to help"
Well, Yes, I have a suggestion and it is 'change your doctor'. I had to diagnose myself.
Not one doctor nor any professional could diagnose me with one of the commonest autoimmune diseases. One private doctor diagnosed me as having a 'web' in my throat and would need had an op to remove a 'web' or I would choke to death (private insurance).
I was concerned because I don't do well on anaesthetics. After op he didn't come to see me (which they usually do) and I was surprised and returned home. I was feeling desperately unwell.
The following week I was the only person in the waiting room when he popped his head round the door and then went away. I sat another 15 minutes then enquired why I was awaiting him. (I believe he was looking for my daughter - not me - as she had asked him so many questions about the op the previous week)
Shortly thereafter he called me to his office and then told me I didn't have a 'web'. Well - what was on the barium swallow I queied? He didn't answer but you don't get your money refunded and it was a while afterwards that I diagnosed myself as hypo. What that doctor saw - I believe - was a swollen thyroid gland on the barium swallow and not a web at all and was hypothyroid.
I was still feeling so very unwell and when I saw him the following week and I said 'what was on the barium swallow?' He couldn't respond. You don't get your money back.
The way we manage our hypothyroidism is to be prescribed levothyroxine and aim for a TSH of 1 or lower. Not somewhere in the range.
It surprising to find out that our GPs are so unaware and seem to have no knowledge at all about a dysfuctioning thyroid gland.
Did you get your blood draw at the very earliest, fasting (you can drink water)?. Doing so would give you optimum results as the TSH drops throughout the day or if we've eaten.
I'm so sorry to hear about your experience! that's absolutely awful!!
there are always new doctors at my surgery, unfortunately I'm yet to have one who can help me, the most I've been give is iron tablets to help with the coldness a few years back
I did a fasting blood test at 8.45 so at least that was done right! I'll be posting my results later on today! thank you so much for sharing your story! I may have to seek help elsewhere you're right
Can I ask your age group please? I had similar symptoms plus many more (Joints pain, very dry frizzy hair and hair loss, brain fog, my nails were peeling etc) hypothyroid related while going through peri-menopause. Usually it’s not just thyroid problems. One thing triggers the other and starts chain reaction in a body.
My blood tests were strange initially and then borderline but I managed to eliminate the symptoms without thyroid medication.
Hi Tuscansun - I very much agree that meno has a big part to play in this, and I’m struggling to find a way through it myself. I’m definitely post meno now but have had on-going strange symptoms fir nearly 2 years which seem thyroid related. Would you tell me how you managed yours, and what we’re your symptoms?
hello I'm 25 and have had these symptoms for at least the last 5 or 6 years, they've just escalated to a point where they aren't manageable anymore. that's great information though because my mum is having the same problem as me for even longer and she is going through menopause currently! Thank you so much!
Got it! I can definitely share my experience with your mum 😊 Anyways, you need to dig into your and your family lifestyle trying to find the causes. As 3 generations have similar conditions means you all have genetic predisposition that triggered by lifestyle. It’s not even hereditary per se but mainly is determined that you had similar lifestyle at least for some time - while you were growing up.
Industry led us to believe that food, drinks, water, cosmetics, hand wash etc - all different products that we consume on daily basis - are “neutral” but in reality they are not. They all contain chemicals which in turn change out biochemistry.
Your liver can be overburden trying to detox your body and your symptoms might well be an indication of high toxicity.
Brain fog is almost always indicate high level of toxins in blood.
How is your gut and liver? Do you have any allergies? Skin problems?
My advise is educate yourself first - you can do a lot to help your body to heal - and change your GP.
Thank you so much! this is really helpful! I'm getting educated fast thanks to this thread! Thank you! yes I would love to know more about thyroid in conjunction with menopause! Thank you so much!
I feel compelled to comment, that Total T4 doesn't provide us with much information. Most of the thyroxine (T4) produced by the thyroid gland is bound to proteins and is therefore, inactive. What tells us something is the level of Free (unbound) T4.
But even more important than FT4 is FT3. That's because thyroxine can be looked at as a "storage hormone." It needs to be converted into liothyronine (T3) to be used at the cellular level throughout the body. It is converted by knocking off one of the iodine atoms from the molecule--a process known as deiodination. The unbound T3 is called Free T3 (aka FT3)
It's the lack of FT3 that causes hypothyroid symptoms.
Doctors have been taught to rely on TSH (Thyroid Stimulating Hormone). But TSH is not a thyroid hormone; it is produced by the pituitary gland as a signal to the thyroid gland to produce more thyroid hormones. So when the TSH is high, that's because the thyroid hormone levels are too low. When TSH is too low, too much thyroid hormone is circulating in the blood. (This condition is called hyperthyroidim.)
If you have in-range TSH and in-range FT4, you can still be hypothyroid if your FT3 is low.
So when checking and re-checking your thyroid function, the doctor should be ordering up TSH, FT3, and FT4, plus checking the antibodies to make sure you don't have autoimmune thyroid problems (Hashimoto's) or Grave's disease (hyperthyroidism).
But my example is still relevant to ilovedoggos case, and an FT4 result on this blood test would still have been within range. and so would still have placed me in the over- range TSH/within range T4 (Sub- Clinical Hypothyroidism) category. which is where ilovedoggos is currently (with raised antibodies)
From my observations when i have seen TT4 and FT4 results on same blood test the FT4 will usually be slightly less than the TT4, but not much different.
It just happened that my Gp at the time only did a TT4 rather than an FT4 test. It was a couple of years later when they changed to testing FT4.
I haven't seen any examples of NHS using TT4 for a while , they seem to use the better FT4 test nowadays , but this was back in 2003.
I agree about FT3 too , doctors should be testing that as well, it is the most important one in my opinion, but this is the NHS, so we have to work with what we've got and there is no way an NHS GP will order an FT3 test at this stage for ilove doggos . They have done an FT4 and antibodies because the TSH is over range. but that's usually your lot here unless you get a private test done.
Ilovedoggos if it helps to get your head round it ; think of TSH andT4/T3 on opposite ends of a see-saw......... if the T4/T3 go lower the TSH goes up.... if the T4/T3 go higher, the TSH drops.
I was/am that way, too! My blood tests were in the low-to-mid normals, so I was blown off by my primary care doctor. Out of desperation, I went to a natural path doctor and paid for a more complete set of blood tests. The big clue that jumped out was my extremely high "reverse T3" level. I've seen rT3 tests poo-pooed in here, but that was the only flashing neon sign that got my symptoms thoroughly investigated.
In my own case, she put me on T3 medication (Cytomel) about 3 months ago. I am up to 35mcg, and have so far experienced better skin quality, and the muddled thinking and confusion is less. I think my energy is a bit better, but I don't think I'm at an optimal dose yet to feel my best. (We increase the dose 5mcg every 2 weeks.)
You might also want to be tested for various virus. As it turns out, I also have chronic Epstein-Bar virus, which can definitely exacerbate symptoms! So I'm also on a course of antiviral natural supplements, just started a month ago (for six months).
In my opinion, you may need to see an alternative medicine practitioner to get your symptoms thoroughly investigated, with more specific tests ordered to get to the root. Good luck 🙂
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thank you very much 
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